Northern Ohio Hemophilia Foundation “Rockin’ Cleveland!”

By Shelia Biljes

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Every city has a story, its very own history that locals take pride in and visitors come to marvel. So, what is Cleveland’s story? Well, it’s home of the Rock & Roll Hall of Fame and of the Cleveland Clinic Medical Center. That’s pretty cool!

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It also boasts beautiful beaches on Lake Erie, the Terminal Tower, the Christmas Story House, and its cherished major league sports teams—the beloved Browns, champion Cavaliers and the former Indians, now Guardians.

All of that is a tourism bureau’s dream, but what about an organization less known to the masses, but oh, so very important to families with bleeding disorders? You would have to look over the Hall of Fame, past the Tower and beyond the stadiums to glimpse inside an ordinary building and find the Northern Ohio Hemophilia Foundation (NOHF), whose history is philanthropic, its place in the community it serves is treasured, and there is no admission charge!

NOHF has served the needs of the bleeding disorders community for over 66 years. Founded in 1954, it was just a social group of parents gathering in local venues, such as a library or someone’s kitchen table, to offer support as they struggled to raise children with hemophilia. From its humble beginnings to a quaint office, the chapter now serves 24 counties with over 300 members.

As a newly established organization, NOHF was funded by The Health Fund of Greater Cleveland, a non-profit that ran from 1959-1977 and covered 75% of the chapter’s operating costs. United Torch Services, later renamed United Way, took over the Health Fund in support of the chapter. The remaining costs needed to be covered by member fundraising, and the chapter rose to the occasion. The Rehab-Attic Shop was created as a way to meet the need. The shop sold second-hand items donated by chapter members and friends to raise funds.

The annual Hearts for Hemophilia event morphed into The Black and Blue Ball and is currently the largest fundraising event for the chapter. Organized yearly by Special Events Manager Dawn Evans, the event did not lose momentum even when due to COVID-19, it was held as a Zoom dinner and auction in 2020.

The Annual Meeting and Clambake occurred every fall throughout the 50’s and 60’s, evolving from park gatherings to meeting in hotel banquet rooms, eventually growing into an overnight stay to encompass enough time for education and socialization.

The Annual Meeting continues to this day with nearly 200 members gathering to learn more about ever-changing topics such as insurance, treatment options, joint health, and chapter and industry business.

NOHF is noted for its famous members: Jesse Schrader, professional baseball player famous for his 92 mph pitch, is a current member and uses his talents to work with children in the community. Randi Paltrow, Executive Director in the 90s, is the aunt of Gwyneth Paltrow. In 1997, Gwyneth honored Cleveland with a visit that generated chapter funds.

Several of the most honored members and friends may not be known to the general public but are greatly regarded in the hemophilia community nationwide. In the 1950s, Dr. Oscar Ratnoff, a hematologist at Case Western Reserve University School of Medicine, identified Factor XII. He also isolated blood proteins and found the blueprint for the clotting cascade. This research led to treatments we still use today. In the early 1970s, he also developed a way to identify carrier status. At the top of his list of accomplishments, he saved many hemophilia patients from contracting AIDS by following the connection between HIV and blood clotting factors, and warning of the risks early in the epidemic.

Another chapter member, Glenn Pierce, is known for his work with NHF and MASAC. Our very first Executive Director Ruth Saylor, 1957 until 1988, forged her way in the arena of advocacy and networking. She made each and every member feel special and valued, and even visited members’ homes frequently. She spoke at events across the country raising awareness on the issues most impacting the bleeding disorders community.

Today NOHF’s staff includes Executive Director Tanya Ricchi, Special Events Manager Dawn Evans, Program Manager Randi Clites and Administrative Manager La’Chandra Oliver. The team works diligently on behalf of all chapter members ensuring all available resources are accessible to those who need them. Among these resources are scholarships, emergency aid, medic alert bracelets, summer and family camp, educational dinners and events.

Tanya Ricchi shares her thoughts on upcoming objectives, “My goal for the chapter is to support our families through the times of change that are on the horizon and strive to find creative ways to continue providing meaningful and relevant education and support. We want to encourage and assist the members of our bleeding disorders community to reach their full potential.”

As a 24-year member, I am proud of my chapter and what it accomplishes on a daily basis. Tanya and her team move the community forward meeting the ever-changing needs of its members through specialized programs, scholarships, emergency assistance and more. The towers, halls and stadiums on Cleveland’s shoreline cannot outshine the meaning of strength and hard work of the Northern Ohio Hemophilia Foundation.

NOHF: 216-834-0051, info@nohf.org
https://nohf.org/

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Meet the Team: John Martinez

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BioMatrix is dedicated to making a difference in the bleeding disorders community. Our team of Regional Care Coordinators and Patient Care Specialists provide support that draws on personal experience and a genuine commitment to the bleeding disorders community. Our “Meet the Team” segment invites you to get to know our incredible staff a little bit better.

In this edition we feature John Martinez.

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John Martinez is an educator, caregiver, advocate, volunteer and consummate professional dedicated to serving the bleeding disorders community. His involvement goes back to the mid-nineties when he and his wife set out to ensure families were connected with the right resources and support to navigate life with a bleeding disorder. That commitment continues to this day. John has a strong interest in helping families navigate care, especially those who do not speak English as their primary language. He and his family live in northern California where he remains very involved with the bleeding disorders community.

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Tell us a little about your background.

Born in Tulare, California, I am the 4th of 8 children. My parents were migrant farm laborers from northern Mexico. When I was 8 years old, my family moved to Clovis, California, where my father attended an adult school to learn English, earned a high school diploma and entered an auto mechanic program. With his Journeyman certification, he spent well over 20 years working for the University of California. My parents greatly valued education as an opportunity to improve and create a new life. With that, I attended Fresno City College and the University of Phoenix, earning a Bachelor of Science degree in Business Administration.

Before working in the bleeding disorders world, I spent 19 years as a teacher at Clovis Adult Education (CAE), part of the Clovis Unified School District in Fresno County. After winning a federal grant that allowed CAE to open a community technology center in Fresno, I spent the next 12 years running the facility. Services provided included computer classes, English as a second language, job search assistance and a pre-school program.

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What brought you to BioMatrix?

After 14 years of volunteering in my local bleeding disorders community, I was offered a position with a specialty pharmacy. A few years later at a national event, I met a BioMatrix care coordinator from Florida, and we struck up a conversation. I was very impressed with what he had to say about BioMatrix—the ethics, the value placed on teamwork and the dedication to the community. It piqued my interest and soon an official interview was arranged. I have happily been with BioMatrix for 2 years.

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Describe your personal connection to the bleeding disorders community.

My involvement in the bleeding disorders community began in 1995 with the birth of our son, David. At 4 months old, I noticed the baby had a small bruise on his knee—it seemed to cause him some pain. At the next pediatric appointment, we discussed the bruise with his doctor, who, in an over-abundance of caution, recommended blood work and a knee scan. We watched as our son was poked and prodded and seen by several doctors. We were informed that David had an accumulation of blood in his knee that needed to be drained. We were confused but also trusted the physician. And so, a needle was pushed into his knee to relieve the pressure and we returned home. Within a couple of hours, we received a call informing us there was an irregularity with David’s PT blood work and we needed to come back to the hospital immediately.

After our son was admitted, a hematologist told us David had hemophilia. He gave a vague explanation that it involved coagulation needing intravenous medication and that a social worker would be arriving to talk with us. Since my wife’s primary language was Spanish, I asked for someone who could explain what was happening in her language. We waited for 3 days—apparently, no Spanish speaker was available. When we were finally home with our son, we began our own search for information and made appointments with a genetic counselor and a hematologist. Although our family members were supportive and tried to offer comfort, it was difficult to explain the seriousness of the diagnosis. As parents, we struggled to absorb the new reality for our son.

Two years after receiving the diagnosis for our first son, we welcomed our second, Daniel, who was also diagnosed with severe hemophilia A. This time, we knew more, but not as much as we should have.

After several years of limited access to information, we were finally made aware of the Hemophilia Foundation of Northern California. The first family event we attended resulted in a meeting with a well-known hematologist who helped us understand how to better advocate for our sons. That meeting led to a life-changing medication adjustment for our eldest son. He went from spending an average of 5 days a month in a wheelchair to never being dependent on one again. With new understanding and access to more regiment options, my wife and I began advocating for major changes in both of our sons’ treatments. With these changes, the boys began a life of sports—soccer, baseball, basketball and karate.

We began meeting with other families in the Central Valley area and sharing the information we had learned, especially with families who spoke Spanish. Soon after, we began coordinating educational events and support groups with the blessing of the Hemophilia Foundation of Northern California. We spent the next 14 years volunteering in the Latino community of the Central Valley area advocating for families such as ours.

My wife had dealt with bleeding issues related to her menstrual cycle since she was 12 years old; doctors always told her it was normal. After the hemophilia diagnosis for our son, we began questioning if she might have a bleeding disorder. At the time, we were told only boys could have hemophilia and that, at worst, she was a symptomatic carrier. Being unable to convince the HTC to test for a bleeding disorder, she discussed the issue with her gynecologist who then ordered the blood tests.

She was officially diagnosed with mild hemophilia A. In 2002, we welcomed a baby girl, Victoria. It took quite a bit of continual advocacy, but we were finally able to have her tested and obtained a diagnosis of mild hemophilia as well. With the experience of my wife’s undiagnosed bleeding problem and the struggle to obtain a proper diagnosis for her and for our daughter, the subject of women’s bleeding disorders and proper diagnosis has become an important issue to me. I am happy to work in a field that allows me to educate others about these issues.

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Who is the most positive influence in your life, and in what way?

My wife, Leticia, has been a consistent and positive influence in my life since we met 30 years ago. She has always encouraged me to work hard and explore new avenues and challenges, including the ones eventually leading me to working with BioMatrix.

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How do you feel you are Making a Difference?

Providing culturally sensitive and language-specific educational opportunities is of utmost importance to empower the Latino bleeding disorders community. I am Making a Difference by sharing my experiences and knowledge to help families better participate in the crucial decisions necessary for positive health outcomes.

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What is the most cherished part of your job?

With the myriad of problems that can present themselves when living with a bleeding disorder, I greatly enjoy learning about new resources available to assist families. It is especially satisfying to work with the Latino community and be in a position to offer Spanish-language education and information to families who may struggle with the language barrier in medical settings. I am passionate about empowering families to improve the quality of life for themselves and their loved ones.

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What advice would you give a newly diagnosed family?

When working with newly diagnosed families, I am a strong proponent of asking questions and exercising a parent’s right to understand their child’s diagnosis. The role parents play in making medical decisions regarding their child is absolutely vital. My advice to a new family is to keep asking questions. Get educated, and trust your instincts. Advocacy and education are key to providing the best possible life for children in the bleeding disorders community.

For myself, three of my proudest moments were watching my sons and daughter walk across the stage to receive their high school diplomas, bleed free.

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“New Knee or No New Knee?” That Was Once The Question!

By Felix L. Garcia

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As someone born in the 1970s with severe hemophilia, I have experienced significant joint damage. With that, the question of joint replacement has come up. My parents faced this question for the first time when I was in elementary school.

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At the time, the chosen course on my behalf was an arthroscopic synovectomy over the summer before entering middle school. That was fun… well, not fun, but necessary. It bought me a little time before actually having to get a full knee replacement. About 3½ years is what it yielded.

This was around the end of the 1980s and I was still not offered the choice of prophylaxis treatment to help extend the life of my knee. I know, I know… it sounds like the dark ages to young people with hemophilia and their parents. What can I say? There was life before prophy. Halfway through my sophomore year, my knee crumbled beneath me and there was no question – I needed a new knee. The question became, “How soon?”

Deciding on whether to have a knee replacement isn’t the only consideration. When becomes a big issue. In high school, I waited until summertime to have surgery so I wouldn’t lose a whole year of classes. That meant going to school and dealing with a lot of pain for an extra 3 months while getting around with a severely damaged knee, which meant more damage overall. We also have to look at our financial circumstances and whether the out-of-pocket costs could be afforded at that specific time. Financial issues can have lingering consequences.

Too often I hear from other bleeding disorders patients who put off joint replacement surgeries because they’re afraid the results will be worse than what they currently deal with. When it comes to knees, it’s easy for me to say, “Do it, do it, do it!” but not every joint is created (or re-created) equally. This has to be a well-thought-out medical and personal decision made carefully given all of a person’s mitigating circumstances.

An elbow may have other risks and options, and ankles are even more of a consideration because they bear the full brunt of a person’s weight, and the medical technology is not nearly as advanced as it is with knees or hips. The decision to have joint replacement surgery is a family concern. It will affect everyone around you. Of course, your doctor will play a huge role in your conclusion, but do not be too quick to put limits on who to include on your pre- and post-surgery teams.

Since my first knee replacement in 1991, I had my other knee done in 2014. However, that was not the end of my knee saga. The first knee I had replaced lasted me 25 good, long years—well outliving its 8-10-year expectancy offered back then. So, I once again found myself asking, “New knee or no new knee?” I’m a husband, father, grandfather, and still a son to my parents who were to be a big part of my care team. After living years with limits and pain, I still had some hesitation.

In my 20s, I worked in construction (not recommended for most with a bleeding disorder), and I took pride in building and creating. I found satisfaction in the sweating and working “like a man” (to fulfill the machismo in me). In time, things have changed and even though much of my work is on a computer these days, I still very much enjoy doing my own home improvements and repairs.

As time went on, my growing limitations had me calling on others to do the work for me, and it was a definite bruise to my ego. I know it’s old-fashioned, but as a husband, I still enjoy being the provider, protector, and Mr. Repairman to my wife. As a father, I miss not being able to keep up with my kids. As an employee with a job to maintain, I didn’t want to be less of an asset as I recovered. “New knee or no new knee?” The question reverberated in my head.

My biggest new knee advocate was my wife. She didn’t like seeing me in pain and frustrated all the time. She was with me through my last knee replacement when we were still in our newlywed stage. She knew what to expect. My children were also encouraging, promising to help. With teenage boys who normally don’t say two words in a row, that’s a big deal. Then there were my parents. The last time, they drove 300 miles to be by my side. They maintained the household and the kids and made the trip back and forth from their home to ours several times during my recovery. With all this heavy on my mind, the decision was made—it was time for a new knee!

There are a lot of ducks to get in a row before having any major procedure. Some of the tasks have to do with insurance coverage, providing proof of necessity, doctor’s schedules and availability, and the availability and preparedness of caretakers. Something many forget to consider in advance is their physical therapist. Meet with a therapist before the procedure. It’s important to establish a good connection and understanding with the person that is going to get you moving again and will be helping you achieve the desired outcome. It’s important to be on the same page when it comes to setting expectations. It’s very uplifting when your therapist views your progress as his or her own goal and is great at cheering you on.

Keep in mind even after the physical therapy sessions end, your personal commitment to improvement continues. My knee didn’t go bad all at once, and it will take some time to get it to where I’ll be satisfied.

Probably the most important thing and one that should never be left out of the preparations is to get in the right frame of mind. You will be the patient (repeat this to yourself). You will still be the partner, the dad, grandfather and son, but for this short time in your life, you will need to be the patient and allow others to help you. Let them.

Get it in your head your caretakers will want to take care of you. Get it in your head you will probably need some sort of pain management but understand it’s meant to be short-term. Don’t take what you don’t need. Get it in your head, this will be uncomfortable—even painful for a while, but it will be worth it to be out of constant pain.

Once you and your doctor have decided a joint replacement is the way to go, my recommendation is to set a goal and keep your focus on it. For one surgery, my goal was to be strong enough to ride my motorcycle again. For this latest surgery, I focused on being able to hike and play ball with my kids again. Whatever your objective, make it as big as you are willing to work. The bigger the goal, the longer it may take. One goal I had was to build a shed. Not one of those snap-together plastic things, but one for which I would have to pour cement. A trip to the store for lumber and materials, shaking the dust off my rusty old toolbox, my new knee and I were ready.

There’s nothing like sitting on the rafters of a roof you just nailed in yourself. I made and lifted the 4 walls myself, perfectly square I might add, then my son helped me attach the rafters and metal roofing. I finished the trim, installed a sliding door, and the job was done (I’m making it sound easier than it was).

As I sat on the roof waiting for my son to reload my nail gun, I realized, “This is why I had surgery.” I know everyone who has a joint replacement is not going to turn into Bob Vila (I had that skill set before surgery), but so many of us have things in life we have given up in exchange for fewer bleeds, less pain, and because we simply couldn’t do certain activities safely anymore.

Think about what that is for you and then ask the question, “New knee or no new knee (elbow, hip, ankle).” Lately, I’ve been hitting the basketball court with my boys for some much-needed cardio and just plain fun shooting hoops. It feels good. Thank you, new knee!

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Disability Happens: Social Security Disability (SSDI)

By Shelby Smoak, Ph.D.

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Unfortunately, a life with hemophilia may become a life with a resulting disability. This was almost a certainty before modern-day therapies due to the crippling joint damage of long-term hemophilia.

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Today, however, it may be something that one faces as a temporary necessity, perhaps after joint replacement surgery, as was the case with me when I had to have a total hip replacement and was unable to work for a year. Or perhaps, hemophilia having done its damage, the need for filing for disability may be more permanent. In either scenario, it’s best to know a few primers about disability and be prepared for the possibility. None of us, I believe, really want to declare ourselves disabled, but when we cannot work because of our hemophilia, we may have to lean into Social Security disability benefits for our health and our life.

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What is SSDI?

SSDI provides assistance to persons with disabilities. SSDI will pay benefits to you and certain family members if you are “insured,” meaning you worked long enough and paid Social Security taxes. SSDI recipients also become Medicare eligible after a 24-month waiting period.

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Can I apply for SSDI? 

SSDI: Apply if your condition has worsened, and you expect your medical condition to last a full year or longer.

I say: Bleeding disorders don’t necessarily “worsen,” but the resulting arthropathy and joint damage does, so if you are facing disability as a result of a bleeding disorder, you are likely experiencing the effects of the bleeding disorder “worsening” (arthropathy), but not necessarily the bleeding disorder itself. Therefore, your application for disability will need to involve the hematologist and an orthopedist who in tandem can verify your situation.

When I applied for disability, my hematologist provided the bleeding disorder verification and necessary lab work, and the orthopedist sent the reports and assessments about my joint damage that became more valuable within the process than the hematologist’s.

SSDI: Apply if your condition is severe enough that it keeps you from doing a substantial amount of work.

I say: In some cases, developing an inhibitor might trigger the need for disability in which case the bleeding disorder itself would be the cause of an inability to work. In other cases, the condition keeping you from working may instead be joint damage. These become important distinctions you will need to understand in your application process.

Keep in mind, employees at the Social Security Administration may not have an intimate knowledge of a bleeding disorder and/or understand its long-term effects. If joint degradation is the cause of your inability to work, keeping a steady emphasis on joint damage will help your interviewer better understand your situation. An inability to walk without assistance would keep you from working but having a lifetime of knee bleeds would not necessarily lead someone to draw the same conclusion. Moreover, in my application process, when I continually referenced my hematologist and my bleeding disorder it confused the interviewer since I was facing orthopedic hip surgery and NOT a pending bleeding disorder issue. Nearly all of the interviewer’s questions were about the orthopedist’s notes.

SSDI: Apply if you have worked 5 of the last 10 years and paid into Social Security.

I say: Past work is a requirement of receiving SSDI. It varies on how Social Security may assess your past work experience, but it is necessary. Your jobs pay into Social Security, making you eligible for those benefits. If you haven’t worked and therefore not paid into Social Security, you would be ineligible for benefits. If you are facing a disability and you have not worked and paid into Social Security, Supplemental Security Income (SSI) may be an option.

SSDI: Do not apply if your doctor doesn’t believe your condition will prevent you from working.

I say: Full support of all your physician(s), especially your hematologist and/or orthopedist is essential to the process.

SSDI: Do not apply if your condition is expected to be temporary (a year or less).

I say: This was a bit complicated for me as I was facing surgery which would see me recover in about a year and would, therefore, be temporary; yet I had no way to support myself financially during that time. Short and long-term insurance policies were not offered through my employer and were cost-prohibitive due to my HIV and hepatitis C. I was caught in a tough spot, but working with my physicians and the HTC social worker, I applied.

In my application, the orthopedist included evidence of ALL my joint damage, which became important in explaining the disability as lasting longer than a year. If the orthopedist had only sent evidence of my hip’s joint damage, the case may have never been approved since it was understood that the joint was being replaced and would, ostensibly, end any disability I had due to the hip.

It then became important to show the compounded impact of damage to multiple weight-bearing joints. This is how the approval was finally given. I only received SSDI for the year which it was needed. Once my joint was replaced and I was able to return to work, my disability claim ended.

SSDI: Do not apply if you are able to earn more than $1310/mo.

SSDI: Do not apply if you haven’t worked enough to be eligible for benefits.

I say: Both statements are as declared. In my case, I had been a full-time teacher for many years before my application and was eligible.

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What additional criteria must be met to be eligible for SSDI?

SSDI: You must have a definitive lab test establishing your bleeding disorder and/or a physician signed report testifying to your condition.

I say: Simply having a bleeding disorder does not qualify someone for SSDI, but having proof of a bleeding disorder diagnosis is essential in the application process.

SSDI: For determining a disability, you must have had bleeding/clotting complications requiring at least 3 hospitalizations in the last 12 months. Further, the hospitalizations must have been at least 48 hours (which may include time spent in the ER) and be at least 30 days apart.¹

I say: Remember, these criteria speak to the bleeding disorder only and would be relevant to cases like inhibitors and/or specific bleeding complications. My application - and most of those with hemophilia - would be a result of arthropathy and joint damage as the disability cause. These criteria will likely take precedent over your bleeding disorder. In fact, according to the CDC, arthritis is the most common cause of disability among adults; arthritis is a form of arthropathy or joint disease, and many physicians use the two terms interchangeably.²

SSDI: If your bleeding is relatively controlled and you do not meet the above criteria, you may be eligible based upon other factors, noted as “repeated complications of hematological disorders.”³ A person would need to show severe limitations in one of the following: performing daily living activities, maintaining social functioning, or completing tasks in a timely manner because of problems of pace, persistence, or focus.

I say: Today, many people with bleeding disorders are on prophy regimens to control their bleeding, so it seems SSDI is opening the door to the arthropathy (“repeated complications”) that would make someone eligible for disability. There may be other situations as a result of having a bleeding disorder such as repeated brain bleeds, which may impair cognition and/or motor function.

SSDI: Social Security will determine if you are unable to return to any of your past jobs or any other jobs based on your age, education, work experience, and functional limitations caused by your bleeding disorder.

I say: Social Security may investigate your work opportunities and determine if you are indeed unable to continue in your present job or find another type of work. At the time of my application, I was a teacher and my daily presence in the classroom was required, something I could not physically do. This was before online classes and Zoom, so the physical demands of my job and the limitations of my arthropathy prevented work. However, in today’s world of online classes, there may have been other work opportunities I could have pursued, and which may have prevented a disability approval. But that is only speculation. Others have shared that having to rely on crutches or having to use a splint several times a month turned out to be the reason a disability judge finally approved the application.

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What are the SSDI benefits?

SSDI: Typically, SSDI provides a monthly check based on age, income, number of years worked, and projected retirement date, paying about 40% of pre-retirement income. The average monthly benefit for disabled workers is $1258 in 2020.⁴ After 24 months, you will be eligible for Medicare.

I say: My prior year pay stubs were provided, which were then averaged and equaled about 40% of that total income. It’s important to know the amount is not simply based on your last paycheck but the year. If you changed jobs within the year with significant salary differences, consider the average as you work out your budget.

You will need to secure insurance while waiting for Medicare. Ending work is considered a qualifying life event for eligibility for an ACA plan. You would also likely be eligible for subsidies to help pay for the insurance, especially if you were now out of work, too.

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How long does it take to receive SSDI benefits?

SSDI: It will take 3-5 months to get an initial decision.

I say: It takes a long time. Plan for about a year before approval and then benefits to be received. My approval took 10 months; however, I was exceedingly organized. My paperwork was sent within a day. I communicated immediately with all my physicians and pressed them to submit required reports and signatures, and I was prompt in scheduling my interview and follow-up meetings with Social Security. Even with that, my initial application was denied. I appealed, which added time.

In the appeal, Social Security requested an additional set of x-rays from their approved radiology center. I called immediately and still had to wait several weeks before the appointment. Once these x-rays were completed, it still took another 3 months before the approval arrived. Social Security may also ask you to schedule appointments with their doctors who may have limited knowledge of bleeding disorders. Any delays with paperwork, callbacks, and appointments will only lengthen the time to process your application.

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What are the top reasons SSDI claims are denied?

• Lack of hard medical evidence. Doctor’s notes, medical records, exam notes, and test results are vital.

• Prior denial. Restarting a new claim for the same condition does not work. Appeal the original denial.

• Your income. If you are working and earning more than $1310 a month, you may get denied.

• Failure to follow treatment.

• Failure to cooperate. The requested paperwork must be provided, and you must show up for medical exams.

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What should I do if my SSDI claim is denied?

• Appeal the denied claim. Do not restart a claim. This will only add time and confusion to the process. My initial application was denied. I appealed that claim and was eventually approved.

• Do not become discouraged. I have heard from others that the process can take even up to 2 years and that an initial denial seems to be part of the process.

• If a second denial is received, consider contacting an advocacy organization familiar with Social Security disability or an attorney to help further your case. Patient Services Inc. (PSI) deals with many bleeding disorders-related SSDI cases and is available to the bleeding disorders community.

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How will I earn income while waiting on SSDI?

This is tough to answer because these are unusually difficult times; in addition to the health complications, financial obligations can intensify the stress of this change. Having short-term and long-term disability insurance policies are meant to serve as buffers during these periods. Outside of that, your income options are limited, especially if you do not have substantial savings to fall back on.

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Can I earn money while on SSDI?

Yes. The Ticket to Work program helps the disabled get back to work. Beneficiaries can work a 9-month trial period and receive full benefits. You may receive benefits in any month you earn less than $1260 (2020 figure). If you earn more than that, benefits will end.

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How long may I receive SSDI benefits?

SSDI benefits will be received as long as you are disabled and unable to work. At retirement age, benefits won’t stop. The name changes from “disability benefits” to “retirement benefits” but the amount remains the same.

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Hopefully, many questions regarding Social Security Disability (SSDI) have been answered. Traveling the path to applying for SSDI is often difficult—physically and emotionally. Please free to reach out to education@biomatrixsprx.com with your questions.

In our fall issue of BioMatrix News, we will examine the topic of short and long-term disability. Stay tuned!

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References

1. Social Security. “Disability Evaluation Under Social Security: 7.00 Hematological Disorders—Adults.” ssa.gov/disability/professionals/bluebook.

2. CDC. “Disability and Health Related Questions.” CDC.gov. 16 Sept. 2020.

3. Hotfelder, Aaron. “Is Social Security Disability Available for Hemophilia or Other Bleeding Disorders?” Disability Secrets. Disabilitysecrets.com.

4. SOURCE: Hartman, Rachel. “6 Frequently Asked Social Security Disability Benefit Questions.” U.S. News & World Report. 19 Oct. 2019. www.money.usnews.com

Meet the Team: LeAnn Wilson

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BioMatrix is dedicated to making a difference in the bleeding disorders community. Our team of Regional Care Coordinators and Patient Care Specialists provide support that draws on personal experience and a genuine commitment to the bleeding disorders community. Our “Meet the Team” segment invites you to get to know our incredible staff a little bit better.

In this edition, we feature LeAnn Wilson!

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“When patients are empowered, their lives change. My number one goal is to empower patients while providing family-focused support that improves quality of life and makes a difference for the bleeding disorders community.”

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LeAnn Wilson has been an active member of the bleeding disorders community since 2008 and has served in her role as a BioMatrix Regional Care Coordinator since 2016. She primarily serves patients in Tennessee, Mississippi, Arkansas, and Louisiana. LeAnn was born, raised and still happily resides in Bethel Springs, Tennessee, with her husband Adam of 19 years and their two children, Hunter and Haylee. In addition to spending time with her family, she enjoys the outdoors, crafting, singing and cheering on her kids as they do what they love! 

As a mother of a son with severe hemophilia, she attended many local chapter events and began organizing fundraising activities to give back to the community. With a degree in business management, LeAnn uses her personal and professional experience to provide exceptional service to the families and individuals she works with.

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What is your connection to the bleeding disorders community?

In April of 2008, we were thrown into the world of bleeding disorders two days after my son was born when his circumcision began to bleed excessively. My pediatrician ran some tests and asked if there was any family history of bleeding disorders, which there was none. The doctor returned with the lab results and confirmed my son had hemophilia A. My parents and those of my husband immediately gathered at the hospital. The doctor told us she didn’t know much about hemophilia but proceeded to give us a very brief explanation. She explained the baby would be given clotting factor and then transferred to St. Jude’s Hospital. After 3 hours of trying and 28 sticks, the clotting factor was finally administered.

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How did you react to your son’s diagnosis?

My son’s diagnosis of severe hemophilia A was very difficult for me. I found myself very depressed and fearful. These feelings lasted for about a month.

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How did you overcome your initial fears?

I overcame my initial emotions by educating myself on how to best care for him and leaning on my support group, which consisted of our parents, my pharmacy rep and especially a nurse at St. Jude. The nurse gave me a lot of reading material and was very patient with my constant questions. She showed great compassion even when I called fearing I had clipped my son’s nails and nipped his skin. The nurse and my pharmacy rep were always available to answer my many questions. Their support and kindness were crucial to me.

Early on, I learned the importance of connecting with others in the community, gaining knowledge and insight from my peers and applying what I learned to support my family. I even completed a phlebotomy course to gain a deeper insight and understanding for peripheral infusions.

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As a Regional Care Coordinator, how do you feel you are Making a Difference?

I aspire to make a difference by helping address the range of needs bleeding disorder community members require. I connect and encourage patients to engage the clinical resources at their disposal while providing emotional and peer-support for families as they navigate life with a bleeding disorder. I stay actively involved with the community in my role as a Care Coordinator and on a personal level as well.

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What is one of your proudest achievements?

In 2020, I was recognized by the Tennessee Hemophilia and Bleeding Disorders Foundation with the “Volunteer of the Year” award. I want to give back and support my community in any meaningful way possible and would do so regardless, but to receive the award was such an honor!

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Do you have a favorite quote?

My favorite quote is “Knowledge is Power” and that is my goal, to empower members of our community with the knowledge and support to properly care for themselves, their family and their loved ones.

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What would you say to a newly diagnosed family?

Just breathe. Take a minute and relax. I don’t sugar coat things and say it’s all going to be easy, but I tell new parents that they will be okay—they are stronger than they know, and they will get through this.

Especially to new mothers, I advise them to step away a bit and to be sure to take care of themselves. It’s easy to get lost in caring for others with no regard for yourself. Taking a bit of time for oneself helps balance life and makes for a better caretaker. I also advise parents to educate themselves as well as their loved ones and to set those nearest to them as a source of support and to share in emotions.

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Contact LeAnn
Mobile: (731) 610-5034
Email: leann.wilson@biomatrixsprx.com

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CHRONIC PAIN: New Ways to Cope Using Mind-Body Skills

By Diane Dimon, Dr. RS

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Coping with physical pain is no small challenge. It can be alarming, irritating, humbling, agonizing… And, if you or a loved one live with hemophilia, chances are you have regular doses of pain in your life.

Bleeding into the joints certainly can cause severe pain. Maybe there is ongoing pain from arthritis. Perhaps pain is brought on intermittently by minor traumas, over-use of a joint during exercise or sitting too long at one time. Maybe it’s caused by stress, the weather, or even excitement about a holiday, first day of school or prom.

Managing chronic pain is difficult. The traditional way to cope is with medications, many of which have undesirable side effects. The good news is that non-traditional therapies for persistent pain are now well-researched and proven effective. This article will explore meditation and other mind-body techniques for managing pain and offers instruction in four techniques that you can use right away.

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MIND-BODY CONNECTION

It matters what we think. Forty years of research tell us that our thoughts, feelings, attitudes and beliefs impact our body, our abilities and our pain. Mind-body practices are based on this interconnectedness of mind and body and the power of one to affect the other. They treat the whole person – not just the physical body.

The new sciences agree that mind matters most. This includes quantum physics, mind-body medicine, biopsychosocial medicine, psychoneuroimmunology and neurophysiology, to name a few.

Here is an example from neurophysiology: The moment I have a happy thought, my body’s messenger molecules called neuropeptides instantly send out that exact thought to the 50 trillion cells in my body. In that instant, a chemical message translates my happiness and literally every cell in my body joins in on a cellular level. Happy cells produce “happy chemicals,” such as endorphins and serotonin. Similarly, when I have an angry or worried thought, I instantly have a body full of 50 trillion angry or worried cells, which produce chemical toxins or “stress hormones” such as cortisol and adrenalin. Can you guess which chemicals enhance pain and which reduce pain?

Some of the most commonly used mind-body therapies are meditation, deep breathing, mindfulness, cognitive reframing, positive mental imagery and self-love. These mental skills reduce pain as well as stress, anxiety, insomnia and a host of stress-related conditions. They also have the added benefits of increasing self-knowledge and self-care, and they promote an overall sense of empowerment and well-being.

A brief look at the anatomy of pain will help us understand how the brain processes pain signals and how mind-body skills work to counter pain.

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HOW WE FEEL PAIN

Pain is complex. In fact, after years of research, we still do not fully understand exactly how pain is processed and experienced by the body. However, we do know that our experience of pain is profoundly influenced by our mind – our perceptions and our moods.

Currently, many researchers subscribe to the Gate Control Theory of Pain first proposed in 1965 by psychologist Ronald Melzack and anatomist Patrick Wall. In simple terms, this theory states that pain results from a series of electrical and chemical exchanges involving three major components: the peripheral nerves, the spinal cord and the brain. There is a “gating system” in our central nervous system that opens and closes to either allow or block pain messages to the brain. The core of this theory is that psychological as well as physical factors guide the brains interpretation of painful sensations and subsequent responses.

The illustration below will give you a visual of how sensory messages travel. Sensory messages travel from stimulated nerves in the body to the spinal cord. These nerve signals are then sent through open “gates” in the spine up to the thalamus in the brain. The thalamus acts like a switching station that interprets the sensory information according to three psychological factors:

1. One’s emotional state

2. How much attention is given to the pain

3. The perception of the sensation based on prior conditioning; e.g. if the sensation is thought to be dangerous or not

All this information is integrated and guides the individual’s response. If the brain sends a message back down to close the pain gates, the pain signals are blocked. If the brain orders the pain gates to open wider, the pain signals intensify.

Following are some examples of how thoughts and emotions impact our experience of pain and our ability to cope.

• People often find their pain worsens when they feel depressed, and it improves when they feel uplifted or become involved in fun activities.

• Athletes often do not notice the pain of a fairly serious injury until the “big game” is over when they can pay attention.

• A child who has heard horror stories about visiting a dentist will likely feel alarmed and experience significant pain from even the gentlest of dental probes.

• Chronic stress causes muscle tension which exacerbates pain.

• Anticipating pain before it occurs causes anxiety as well as muscle tension, which makes the pain feel stronger and last longer.

• A feeling of helplessness often leads to negative thinking, which tenses muscles and opens pain gates; e.g. “This pain is unbearable, it’s never going to get better.”

Many of these examples can be applied to situations for those living with a bleeding disorder. One may not notice the pain of a bleed when preoccupied by school, work or other activities, and it is only when the hustle and bustle slows down that we take full notice of the bleed and the pain that has developed. For children not yet adjusted to regular infusions, the anticipation of pain can cause anxiety and create an experience that exacerbates pain and stress. Further, our pain may be increased when we succumb to helpless negative thinking brought on by the chronic nature of the condition.

Here are some mind-body factors that open and close pain gates:

Some factors that open pain gates (leading to more pain)

• Stress

• Anxiety regarding pain/negative thoughts

• Focusing on pain

• Mood: depression

• Physical inactivity

• Lack of sleep

Some factors that close pain gates (leading to less pain)

• Relaxation/Meditation

• Cognitive reframing/positive self-talk

• Distraction from pain

• Mood: wellbeing

• Physical exercise

• Adequate sleep

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DOES THIS MEAN PAIN IS “ALL IN MY HEAD”?

Although mental and emotional factors can greatly affect the experience of pain, this is NOT saying pain is made up, imagined or psychological in origin. Pain is a physical sensation in the body. It is real and distressing; however, it can be altered by skillful use of the mind!

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THE PERCEPTION OF PAIN

Our goal is to shift our perception of pain. Gandhi once said, “You can’t change the wind, but you can adjust the sails.” We are learning to adjust the sails of perception of pain so that we no longer set off the stress alarm around it. As long as there is no “acute” pain that requires an emergency response, we can learn to view it as a challenge rather than a danger, and thereby avoid intensifying the sensations by tensing muscles and opening pain gates.

When pain strikes, ask yourself, “Is there any danger here?” If not, stay calm. Instead of reacting with fear, resistance and tension, we can learn to relax into it, accept it and maybe even make peace with it as a “difficult old friend.”

This is not resignation, indifference or denial. Instead, it is called equanimity, an inner balance of mind that responds to life with greater calm, clarity and compassion. We bring curiosity and kindness to ourselves, to our body and to the pain, allowing us to live more fully and cope more skillfully.

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LEARNING THE SKILLS

Meditation and other mind-body skills are self-management strategies. They are practices and not pills. Accordingly, one must participate in them. Like an athlete or musician, you get coached, you pick your favorites, you learn, you practice and you enjoy the results.

There are a variety of techniques to choose from. Some involve relaxation strategies that reduce stress and the physical tension around pain. Others use cognitive strategies to outgrow stressful thinking patterns about the pain and cultivate a stress-free perception of pain. All of these relaxation and cognitive techniques help to counter pain, thereby increasing a sense of control over pain and the factors that influence it. Here are four Mind-Body Skills that will help you manage your pain more skillfully.

SKILL #1

Meditation and Mini-Meditation *

Meditation is a classic mind-body technique that instantly relieves stress. It creates a unique state of heightened awareness and physical relaxation called relaxation response that reverses the stress response and reduces pain, anxiety, depression and other stress-related conditions. The effects of meditation usually last far beyond the meditation itself, and you become more skillful at managing life’s challenges. Here is a “formal meditation.”

1. Preliminary Steps: In a quiet location, sit comfortably with your eyes closed. Invite your body to relax. Set aside all concerns and give yourself permission to “just meditate.”

2. 5-5-5 Breathing Exercise: Inhale through your nose, slowly and fully, counting to 5. Hold for a count of 5. Then exhale through your nose, slowly and fully, counting to 5. Repeat 3 times.

3. Use a Focus: As you breathe naturally, place your attention on a chosen focus, such as your breath. Follow the rhythm of each breath as it naturally moves in and out of your nose. Do not control your breathing; just observe it as it is. If you prefer, you can use a relaxing word or phrase for your focus, such as “one-two,” “peace-ful” or “all-is-well.”

4. Practice Non-Judgment: When your mind wanders, just notice and gently bring it back to your focus. Try not to indulge your thoughts, fight them or judge them. Don’t worry about how you are doing. As best you can, maintain relaxed alertness and non-judgment. “Oh well, where’s my breath? There it is!” Be gentle with yourself and take the experience as it comes.

5. Continue this for 15-20 minutes: You may set a quiet alarm, peek at your watch or simply ask your mind to alert you when time is up. Then stop your focus and remain in silence with eyes closed for a minute or so. Open your eyes and continue your day.

6. Practice this technique in the morning and evening, preferably at the same time and location.

Note: The above technique can also be practiced in 3–5-minute Mini-Meditations. These are short pauses that fit into a busy schedule and instantly relax tension in the body and reframe upsets in the mind. Mini-Meditations act like a reset button on a computer, whereas formal meditations act like a reboot. Pause whatever activity you are doing, breathe deeply three times and then meditate for several minutes (instructions above). Your eyes can be opened or closed. Do Mini-Meditations during moments of pain as well as stress, anxiety, depression, or when you are feeling rushed or frazzled. Try it before a test, a confrontation, a medical procedure or when you are having trouble sleeping. With practice, these pauses can be as refreshing as a few hours’ sleep.

* For more meditation training and a 20-minute meditation experience that you can use again and again, please see the training CD “Finding Stillness Through Meditation” by Dr. Diane Dimon.

SKILL #2

Mindfulness of Pain

Mindfulness is more than a relaxation technique; it is also a cognitive technique that retrains negative thinking patterns that cause stress and exacerbate pain, anxiety and depression. It replaces catastrophizing thoughts with positive self-talk to cultivate a stress-free perception of pain.

Mindfulness is non-judgmental moment-to-moment awareness. It involves keeping your attention in the present moment without judging things as good or bad. Your goal is simply to observe and accept whatever is happening now, with no intention of changing or fixing anything. It is living each moment - even painful ones - as fully and consciously as possible with a sense of curiosity, kindness and trust. Mindfulness can be practiced while sitting “formally” or in the middle of activity, and also during experiences of pain. Here is a ‘formal’ practice of Mindfulness during pain:

1. Sit comfortably with your eyes closed. Take several deep breaths. Relax your body. Begin by placing your attention on the rhythm of your breath. For 1-2 minutes, follow the breath as it flows in and out of your nostrils.

2. When you feel pain in your body, pause your attention there, and gently and lovingly allow yourself to be with the pain. Put direct attention on the uncomfortable sensations and experience what they actually feel like. Let yourself experience it with a beginner’s mind, without conditioned reactions. For instance, have you ever let yourself really feel pain without judging it as bad? Are the sensations hot, cold, diffused, sharp, achy, throbbing, tingling, pinpricks…? Explore.

3. Try not to fear the pain, resist it or tense up. Let go of judgments about how things should be. See if you can relax into the pain and make peace with it instead of trying to eliminate it. Give it a name. If the pain has been with you for a while, see if you can touch it with kindness and compassion, and treat it like a difficult old friend.

4. Of course, if at any time the pain becomes too much, you can reassure yourself that there is no danger and that you are safe, and you can end the meditation.

5. Practice this for 5-10 minutes at a time. When you are finished, take another deep breath, and slowly and gently open your eyes.

SKILL #3

Loving-Kindness Toward Self and Body

Every living creature needs love to thrive, including our body. Research confirms that loving is literally good for our health by promoting health-supporting body chemistry. However, loving the body can be difficult, especially when there is pain and illness. This Loving-Kindness Technique uses repeated phrases to evoke goodwill, appreciation and friendship toward self and body. It uplifts as well as relaxes. The following is a “formal” practice; it can also be done as a quick blessing in the middle of activity.

1. Close your eyes, sit comfortably and set aside all concerns. Breathe deeply several times and invite your body to relax.

2. Begin to recite inwardly the listed below (or similar that work for you). Direct the phrases to yourself, to your body as a whole or to specific difficult body parts that are associated with pain, tension, sadness, anger, shame… Adjust the words and images to fit, and mentally for five minutes or so. At first this may feel mechanical or awkward, or it may feel wonderful. Either way, the heart opens and loving-kindness grows. Experiment, be patient, and with practice you’ll begin to feel a wonderful sense of wellbeing, acceptance and connection with yourself, your body and life in general.

May I be filled with loving-kindness;

May I be well and safe;

May I be peaceful and at ease;

May I be genuinely happy.

May my Body be filled with loving-kindness;

May my Body be well and safe;

May my Body be peaceful and at ease;

May my Body be genuinely happy.

The formal practice of Loving-Kindness can be practiced anywhere and it can be expanded from Self and Body to also include Loved Ones, Neighbors, Strangers, Difficult People and All Beings.

SKILL #4

Mental Imagery for Pain

Mental imagery combines relaxation and the power of your imagination to access the unconscious mind and produce calming, energizing and healing responses in the body. If you have ever closed your eyes and pictured yourself lying on the beach as a way to relax, you have used imagery. The unconscious does not know the difference between what is “real” and what is “imagined,” so images are like powerful suggestions that encourage your body to do what you are imaging. You deliberately focus on a particular image that “sees” the changes you desire; the more senses you use, sight, sound, smell, taste, touch, the more vivid and powerful your image becomes.

Mental Imagery can be used for relaxation, healing, pain reduction, insight into illness, changing behaviors, accomplishing goals, etc. The following is a guided imagery for pain reduction:

1. Calm yourself, sit comfortably, relax your body and take three deep breaths.

2. Explore different mental images for decreasing pain (see below). Then pick the one(s) that work best for you:

   • Imagine holding a remote-control device (similar to a TV remote control), except that it is connected to your level of pain. Imagine slowly turning down the “pain volume” until you can barely hear/feel/experience the pain.

   • Imagine placing your pain in a strong metal box, and then closing, sealing and burying the box.

   • Imagine your pain is being washed away by a cool, calm river flowing through your body.

3. Whichever mental image you choose, make it as vivid as you can. Allow your mind to experience your image with as many senses as possible; see it, touch it, hear it, think about it, feel it…

4. Cultivate non-judgment, non-attachment and receptivity. If doubt or disbelief arises, just notice and return to your image. Keep a relaxed mind.

5. Practice this for 5-10 minutes at a time. When you’re finished, take another breath and gently open your eyes. The more you practice the image, the deeper the mind accepts it.

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IN CONCLUSION . . .

Chronic pain is challenging. Whether it’s jabbing, burning, aching or throbbing – any way we describe pain, we want it to stop. The good news is we have tremendous power over pain because our experience of pain is profoundly influenced by our mind’s perceptions. I invite you to explore these mind-body techniques and see how they will serve you to feel less pain and experience greater health and happiness!

* For further information on How We Feel Pain:

1. Mind Body Medicine: How To Use Your Mind For Better Health, Dennis C. Turk PhD. Pgs 111-125.

2. Mayo Clinic Guide to Pain Relief: How to Manage, Reduce and Control Chronic Pain, 2008

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Diane Dimon, Dr.RS is Director of Matters of the Mind, a California-based company that teaches a full range of meditation and other mind-body techniques for improved health, happiness and high-performance. She conducts nation-wide seminars, retreats, private instruction, and keynote presentations. Her clients include healthcare providers, hospitals, businesses, universities, youth and individuals from all walks of life. She offers Continuing Education for nurses and therapists. Dr. Dimon has been practicing mind-body skills for 40 years and holds a doctorate in Religious Studies, specializing in the study of consciousness and the mind-body connection. She is author of the Meditation Training CD Finding Stillness with Meditation and her upcoming book Mindful Eating. 

Her seminars include:

Meditation for Anxiety and Stress Reduction

Mind-Body Skills for Pain Management: A Research-Based Approach

Mindful Eating: Lose Weight with Peace, Pleasure & Purpose

Meditation for Youth: Relieve Stress, Improve Learning, Increase Happiness

Loving Kindness: Loving Self, Loving Others

Imagine That! Therapeutic Mental Imagery to Create and Heal

Compassionate Communication: A Language of Peace and Empowerment

The Science of Happiness: A Breakthrough Approach

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A Letter to My 13-year-old Self

By Richard Vogel

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Life is an unknown. And that’s what makes living it so special. Having a bleeding disorder makes it twice as difficult. What if we had some insight into our future? Not that we could change our life but to encourage us when moments look dark. As a 65-year-old man with severe hemophilia, I look back and remember the uncertainty, the worries and fears, and the deep desire to actually live my life no matter what obstacles it had in store for me. If I could write a letter to my 13-year-old self it would go something like this...

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Dear 13-year-old Me,

Things look sort of dismal right now lying on the couch with yet another bleed – a knee the size of a basketball, even after having it aspirated. As always, you’ll get through. It was pretty disappointing you couldn’t go to Woodstock with your older brother that weekend, but you couldn’t put pressure on your knee, so walking was out. But you don’t tend to blame disappointments in life on your hemophilia. Your motto will be,” Tomorrow is another day.” Always know you are a fighter.

There will be some milestones in your life that will make you become the man you are today. For one, you will have outlived your life expectancy by 45 years so far! When you were born in 1956, you were not expected to make it to your 20th birthday. And you almost didn’t. Remember when you had that brain bleed at 3? For someone with hemophilia to survive a brain bleed being treated with whole blood was nothing short of a miracle. Or luck. Look at the bright side – just by surviving you earned a place in medical history.

You don’t realize this yet, but Mom and Dad don’t treat you any differently than your siblings. They want you to live a normal life even though, aside from whole blood and plasma, there is no other therapy for hemophilia. When you were 9, Dr. Judith Graham Pool discovered cryoprecipitate “cryo,” which helped with your bleeding episodes. Three years later, you learned how to self-infuse this new lyophilized product called clotting factor.

In time, you will see major advances in hemophilia therapies… and these advances will also cause you to suffer some heartache. Because of the vast amounts of donated blood needed to make this new clotting factor, you will contract blood-borne hepatitis B and non-A non-B, which years later will be called hepatitis C. Christmas 1973, at 17, you will have jaundice, but it won’t get you down.

In the early 1970s, you’ll be busy living your life. It’s a time of change, politically, musically and creatively, and you are determined to be a part of it, despite hemophilia. You’ll participate in sit-ins protesting the Vietnam War, have fun at Grateful Dead concerts, and discover photography, first as an art form and later, a career. Mom and Dad know it will be difficult for you to hold a steady job because of the spontaneous bleeds, so they will support you in whatever you want to do. They’ll even be okay with you growing your hair long when you tell them it will help you fit in and maybe no one will notice how you limp.

Over the next few years, you will have some great experiences and will learn to live life on your own. Traveling cross country in your van and spending months in New Mexico doing photo-documentary work for the New Mexico Solar Energy Commission and photographing the construction of solar greenhouses on various American Indian reservations are in your future.

That will be the start of wanting to help others, but you won’t realize it for a while. Your photography career will continue in New York City, first apprenticing for a well-known fashion photographer and then opening your own studio. You will take your first trip by plane and sit staring out the window like you’re 13 again—the start of your desire to travel and see the world. Living in Greenwich Village, you will develop a wide range of musical tastes by hanging out at clubs like Max’s Kansas City, the Bitter End, and the Village Vanguard. Enjoy those times. You won’t have regrets.

I am sorry to tell you though, in 1982, in addition to hepatitis, you will contract HIV from the clotting factor you’re using to control your bleeding. You will be at the Perry Street Theater seeing A Christmas Carol with Orson Wells as Scrooge. Halfway through you will have a spontaneous elbow bleed and rather than ruin the evening by leaving, you will sit in pain until you can get home to infuse. You’re used to the cloudy factor you’ll infuse that night, but the next day you will be sick with flu-like symptoms. That’s the HIV. Once the news channels report that HIV is found in the blood supply, you will figure it was inevitable. After all, by then you will have received many doses of clotting factor and blood transfusions.

When you do find out about HIV, the doctor will tell your wife (yes…you get married – twice!), “Why would you want to have kids with him, he will be dead in five years.” You won’t complain though. You won’t ask, “Why me?” You’ll just go on living your life.

At 27, you’re still a little naive. You’ve grown up with these doctors, they’ve kept you alive. Why would doctors and national organizations tell us to keep infusing when HIV was in the blood products? You trust them, but no one trusts them more than Dad. When the first legal trials against the pharmaceutical companies start, many doctors begin testifying against their own patients.

Dad will walk up to my doctor after she testifies for the manufacturers, a woman he considers part of our family, and will tell her she has broken his heart. For a man who doesn’t show his emotions, it is devastating. He won’t ever speak to her again. This memory will stay with you forever. You will realize that day what a true advocate he has been.

But you’re a fighter. A survivor. You won’t let HIV bother you. Your attitude is, “I was exposed to this virus, but maybe I’ve built antibodies.” Maybe you will or maybe you’re just lucky, but you’ll stay fine until 2010 when you develop thrombocytopenia. Possibly from the HIV, it seems your body will begin to turn on itself and start destroying platelets. This will lead to another brain bleed. Again, you will survive, even if the hospital misreads the CT scan and doesn’t infuse you for three days. After that, you do start taking HIV anti-viral drugs. Maybe this will also help you survive the pandemic of 2020—yes, we have one of those coming! Just maybe you’ll be lucky again.

Even at a young age, you will never want to be a burden on society, so you will always work. Your first job will be in the shipping department of a men’s store, and you will drive an ice cream truck after high school graduation. You will have a career as a professional freelance photographer, will start your own trial consulting business, and will advocate for people with bleeding disorders. You inherited the best of both worlds; Mom is a creative optimist while Dad is always pragmatic. It will take you years to see this, but the catalyst for your advocacy is another milestone in your life. Dad passes away when you’re 39.

He will have taken better care of your hemophilia than you do. He made sure you had insurance. He will have held blood drives in your name so you could use blood credits to get clotting factor, which insurance wouldn’t cover at the time. He will have helped the Hemophilia Association of New Jersey (HANJ) pass legislation so insurance companies would be required to cover clotting factor.

With Dad gone, you will have to take control of your hemophilia. Following in his footsteps, you will jump in with both feet, serving as an HANJ board member and the New Jersey representative on the board of the recently formed Hemophilia Federation of America. In later years, you will serve as president of each of those organizations. It will be an honor when you received HANJ’s Past Presidents Award, which includes Dad’s name alongside other former presidents.

Side by side with advocates, you will be involved in getting the Ricky Ray Hemophilia Relief Fund Act of 1998 passed and funded. This will help patients and families get the compensation they rightly deserve. At 13, you haven’t yet heard of Ricky Ray—he won’t be born until 1977. Another young person with hemophilia, Ryan White will be born in 1971. Their lives will come to have much meaning for you.

Later in 2009, you will become a voting member of the Federal Advisory Committee on Blood Safety and Availability, which “…provides advice to the Secretary of Health and Human Services through the Assistant Secretary for Health on a range of policy issues related to blood, blood products, and tissues.” You will continue to use your voice on behalf of and for the welfare of the bleeding disorders community. Dad would have been so proud of you.

You will reach another milestone in your life—65 years old! I’ll fill you in, not even talking hemophilia, as we get older, everything gets more difficult. Throw in some joint damage and diminished range of motion and you’re in for a bumpy ride. Things most people take for granted like buttoning the top button of a shirt are a challenge. By the way, what is the worst thing you can ask a man with hemophilia at the dinner table? Please pass the salt. Never lose the humor. It is what helps you get through the bad times.

I want you to know you WILL endure. Don’t give up! You will find yourself in a very small group of surviving veterans—men over 60 with hemophilia, HIV, and other co-morbidities. You will be absolutely delighted to be in a group of old men with diabetes, high blood pressure, high cholesterol, and osteoporosis. Your kidneys will leak protein, but you know what? It’s a small price to pay to still be here, working, helping people, traveling, whipping up a great meal, and enjoying life!

There will be many times in your life you will ask yourself if you made the right decision. Don’t doubt yourself. You won’t forget your failures, so confront them head-on. They will give you the drive and determination to succeed. Despite the challenges, you will survive.

The future will have its ups and downs but by persistence, hardheadedness, and a little luck, I’m here to say you will make it! As your favorite group, the Grateful Dead will say next year, “Sometimes the light will be shining on you and sometimes you will barely be able to see but what a long, strange trip…” it will be.

Be happy,
65-year-old You

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Meet the Team: Tina McMullen

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BioMatrix is dedicated to making a difference in the bleeding disorders community. Our team of Regional Care Coordinators and Patient Care Specialists provide support that draws on personal experience and a genuine commitment to the bleeding disorders community. Our “Meet the Team” segment invites you to get to know our incredible staff a little bit better.

In this edition, we feature Tina McMullen.

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Tina has served as a Regional Care Coordinator in the Pennsylvania area for over 8 years. She is a fierce advocate, hemo-mom, and one of the kindest people you’ll ever meet.

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What is your connection to the bleeding disorders community?

My son Dakota was diagnosed at 6 months of age with severe hemophilia B. A few weeks before his 6 months check-up, we noticed bruising all over his chest. I was terrified our pediatrician would think we were abusing him. The pediatrician immediately ordered a series of tests. Waiting for those results was the longest 2 weeks of my life.

When the results came back positive for hemophilia, our world was turned upside down. We do not have a family history of hemophilia and had never even considered it. We found out on a Friday, and on Monday we were at the Children’s Hospital of Philadelphia. After all the crying we knew we had to educate ourselves. We started attending educational programs at our HTC and got involved with our local chapter.

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What brought you to BioMatrix?

After my son’s diagnosis, I became very active in the community. I was on the Parent Advisory Board at the Children’s Hospital of Philadelphia. My husband and I were “County Captains” for our local chapter. I wanted to help other families dealing with the same issues I dealt with so when the opportunity to work in the community as a specialty pharmacy rep came up, I knew it was meant to be.

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How do you feel you are Making a Difference?

I feel I am Making a Difference by being a mom and community member first. Always remembering what I wanted for my son. I look at every community member as family. It is my responsibility to help every one of my “family members” address and overcome any obstacle they may be faced with.

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What do you cherish about your role as a Regional Care Coordinator?

What I cherish most about my job is working alongside the pharmacy to provide the best possible care. Talking with a new parent who thinks they are all alone. Seeing that flash of relief, of hope, of realization that everything is going to be okay are the moments I truly cherish.

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What was your most difficult challenge raising a child with hemophilia and how did you overcome it?

There have been so many challenges over the years. First bleed, first infusion, first day of school, first time away at camp, the list goes on and on. I’ll go with the most recent one. When Dakota moved out last year, I worried about everything. My mind was constantly racing. Did he get to work okay? Did he get home okay? Is he infusing like he is supposed to? As weeks turned into months without any issues, I finally realized things were going to be okay.

I did my job of teaching my son how to effectively manage his bleeding disorder. Worry has now turned into the satisfaction of watching my son spread his wings. He’s found the most wonderful young lady, Steph, and now it’s their time to start their lives together.

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Who has been the most positive influence in your life, and in what way?

My mom, Connie, was my most positive influence. At the age of 27, my mom was widowed with 2 small children. Her strength and determination have always inspired me. I believe learning from my mom is what has gotten me through the tough times and greatly influenced the person I am today.

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What is the best advice you have ever received?

Dakota’s hematologist told my husband and me from the very beginning, “You cannot put your son in a bubble. There will be some things he cannot do, and there are some precautions you will have to take, but by and large, he will be a normal kid.” Those words stuck with me for a very long time and had such a calming impact during a time of confusion and fear.

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What motivates you – what is your passion?

My passion is making a difference in people’s lives. Showing compassion, empathy, and understanding while helping lead patients to the resources and support that makes life with a bleeding disorder a little easier.

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What is your proudest achievement?

My proudest achievement is going from having an infant diagnosed with a bleeding disorder and knowing nothing about it to advocating, educating, and supporting others. Building community and working as part of a caring team that truly is making a difference in the lives of others makes me proud.

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Contact Tina
Mobile: (484) 942-4457
Email: tina.mcmullen@biomatrixsprx.com

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Hemophilia Alliance of Maine

Meeting the Needs of Rural Maine: Deeply Understanding the Importance of Tenacity, Commitment, and Connection

By Tracey Gideon

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The Hemophilia Alliance of Maine (HAM) is one of many bleeding disorders chapters in the United States. Small but mighty, it serves patients and families living in Maine - its rural cities, towns and villages - covering just over 35,000 square miles. Ours is the chapter no one thought would, or could succeed, but 10 years later, we are stronger than ever, and we continue to make sure no one feels left out or alone.

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Incorporated in 2011, HAM has worked diligently to serve the community through educating, advocating, supporting and assisting individuals and families of Maine living with hemophilia, von Willebrand disease and other bleeding disorders. We are firmly resolved to continue providing this support.

It was 2009 when Jill Packard and I met at the Maine Bleeding Disorders Center in Bangor, Maine (now located in Brewer). Although it wasn’t clear at the time, we were going to be the co-founders of the Hemophilia Alliance of Maine, we recognized within moments of meeting how important we would be to each other. We were two moms of children affected by a bleeding disorder, we both lived in a rural state, and we both felt we didn’t have the support we needed. Little did we know how impactful our meeting would become for others just like us in the Maine bleeding disorders community.

Our second meeting at Family Camp in New Hampshire was brief, direct and resolute. Demonstrating the importance of tenacity, commitment and connection, we spoke about five sentences to each other. Summed up, we said, “People in Maine need more... are we going to do this? Yes, we are... and no matter what, let’s always be honest with each other and have faith.” We recognized we were ‘Mainers,’ people who deeply value the same things—commitment, connection and hard work, and we were meant to make a difference.

You’ll hear from many organizations within the bleeding disorders community that the most important meetings often happen at a kitchen table. In many homes, the kitchen table is the place where we break bread, where we have difficult conversations and where we celebrate triumphs. It’s no different for HAM. It was at a small, quiet table that we dug deep and built an organization that recognized the people from our state who were feeling disconnected from each other and the larger bleeding disorders community.

With many obstacles in the beginning, it took a few years to establish the organization. First, the medical community and the greater bleeding disorders nonprofit community didn’t fully understand the needs of the rural state. At the time, the nearest community meetings were in Massachusetts. A minimum one-hour drive for some Mainers, with many having to travel up to 6 hours to attend!

Additional challenges presented themselves when living in a place where it gets dark at 3:30 in the afternoon, one can see up to four feet of snow for months on end, and the power goes out just about every time the wind blows. Distance made it difficult for the two of us to get together, plus we both had very young children—yes, it was difficult! With the demands of raising families and the physical distance between us, the formation of the chapter was and continues to be a labor of love.

In 2010, after a year of clearing the way, planning programs, and establishing a cooperative meeting model, we ambitiously assumed the roles of Jill as President and myself as Treasurer. A good friend, Ashley Bean, took on the role of Secretary. Others quickly stepped up to support our fledgling organization with their ongoing support, strong voices, passion and commitment. A year later, HAM took its next big leap when Justin Levesque, Lianne Lapierre and Brandi Cullen joined the board.

Fundraising and program development were the areas we tackled first. The primary programs addressed the most pressing issues. At the forefront were Hemophilia 101 and self-infusion instruction. Community driven, the programs were identified through surveys supported by the hemophilia treatment center based in Portland. The Bleeding Disorders Center of Maine is, on average, a 4-hour drive for many of its patients. Satellite clinics are now held at the Lafayette Family Cancer Institute in Brewer, reducing the extensive drive for many patients.

Early events were well attended - Family Dance, Stick and Swim, Hill Days, and Grandparents Gathering made fantastic debuts. Diving with determination into advocacy, HAM took on greater responsibility with the inauguration of Winterfest, a large annual event, introducing Hike4HAM (now the Unite Hike as part of NHF’s Unite Walk program), and creating a stronger national presence via our website and social media.

Hemophilia Alliance of Maine Winterfest

HAM advanced its progress in 2013 with the addition of Victoria Kuhn to the board. She fueled the organization’s commitment to longevity. Subsequently, HAM hired its first paid employee, Executive Director Vicki Jacobs Pratt. A committed nonprofit development professional, Vicki and the board ensured the future sustainability of the organization. Not much later, HAM was blessed with the addition of Janice Yorke and Terry Rice who drove HAM to embrace change and inspired the strength to amplify our voices.

Utilizing a network of dedicated volunteers, HAM launched PIGLET (People Interested Grassroots Local Engagement Together), a unique outreach program comprised of local sub-chapters based on geographic location. Through PIGLET, HAM facilitates meetings and educational programming for small groups of members within their own communities. These groups provide a significantly higher level of access to education throughout the state.

HAM’s greatest accomplishment is the work done through shared leadership and deep collaboration. By emphasizing our small but mighty approach and deeply valuing our partners, we have found our most success in saying YES to opportunity. Much of our work is done in collaboration with other New England chapters, as well as our care provider partners and national partners.

Today, we hold several events throughout the year to meet the needs of our regional and statewide populations. June 18th was our 10th anniversary and we celebrated with a virtual birthday party; however, we really look forward to meeting with families at our annual Unite Hike for Bleeding Disorders - our first in-person event in over a year and a half coming in September!

At an event several years ago, one grateful mom expressed, “We sometimes get so wrapped up with the woes of hemophilia. We need to keep in mind how far we have come, treatment, education and the resources we have available. We also need to remind ourselves that as caregivers we aren’t giving 100% to our affected loved ones if we aren’t also caring for ourselves. We are so grateful to have HAM for these connections and education to remind us we aren’t alone. It is comforting.”

For more info, contact:

info@mainehemophilia.org
(207) 631-7550
mainehemophilia.org

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Adjustments, Adaptations, Transformations, Changes

By Judy Kauffman, RN, MS, CPNP

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It’s a fact. Life is full of changes, something many of us struggle with. Moving, adjusting to new jobs, schools and neighborhoods can cause stress. Finding new doctors, dentists, and even making our way around a new grocery store can add angst. Many will wonder, “Is this a good change? Will we be happy with the new home/job/school? Will this cause a setback? Did we make a mistake?”

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We are allowed choice about many changes in our lives; however, many are forced upon us by circumstances beyond our control. Aging, illness, finances, and the needs of other people are just a few. Adjustments we do not freely choose are most often the hardest to which to adapt. Changes, especially unexpected ones, can affect our emotional, physical, intellectual, and psychological health.¹

The bleeding disorders world has its own challenging sets of circumstances that eventually require adaptation. Just the initial diagnosis of a bleeding disorder in a child requires a new mindset as well as the learning of a new vocabulary and incorporating an unfamiliar medical regimen. This is often accompanied by sorrow and fear as our hopes and dreams get realigned.

What about when your child’s provider suggests a switch to prophylactic factor treatment? Your initial response might be colored by anxiety as you imagine so many scheduled infusions. Then, it may be suggested that you consider having a port placed to make infusions easier. Not only will your child need surgery to place the port, but you will need to learn the complicated sterile procedure for port access and infusion. Later, someone is going to suggest removing the port and for you and/or your child to start infusing peripherally. Though it’s a scary change, it can provide a great benefit to all involved.

As a Hemophilia Treatment Center nurse, I help patients and families manage many of these changes. I have found that while making adjustments may lead to fear and anxiety in the short term, with support and education, changes can take place and be very positive in the life of the patient and family. Very often navigating through transition leads to personal growth, leaving us stronger than before. Even unexpected and difficult changes can produce some beneficial outcomes.

Throughout the upcoming years, there will be many more reasons for life modifications that you and your family member with a bleeding disorder will face. With some thoughtfulness and anticipation, change can be managed to result in the least amount of sudden disruption possible.

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Acknowledge change needs to happen.

Sometimes we get so caught up in fighting change that we actually put it off instead of dealing with it. Denial is a powerful force, and it protects us in many ways; however, stepping outside of it and saying to yourself, “Things are changing, and it’s okay” can be less stressful than putting it off. In this initial phase, researching all aspects of an impending change can make a big difference. Having knowledge gives us more control over the situation and more confidence when making decisions.²

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Realize even “good change” can cause stress.

We often think only negative situations cause stress. Though getting married, moving to a bigger house, or having a baby are all happy, positive life events, stress and tension will still accompany them. Stress is our body’s way of reacting to change, good or bad. Expect it, and give yourself some grace in adapting to the circumstances.

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Practice self-care.

Keep a schedule that is as routine as possible. Get regular sleep, eat healthy foods, and exercise 3-4 times each week. These measures will help you manage stress and anxiety.³

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Seek support!

Allow trusted friends and family members to help you. It is okay to ask for help! Let a dependable person provide a couple of hours of childcare to give you time to go shopping, take a walk, or just relax in the bathtub. Even short breaks can rejuvenate you and help you manage stress.

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Vent, but not on social media!

It might be a good idea to take a break from social media during times of change and stress. Instead, talk with trusted friends, family, or clergy. Reliable people can help you to look outward and come to terms with what needs to happen.

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Finally, give yourself a break.

In a time of change, you may feel a little out of control. You may feel like you are not living up to your self-imposed expectations. Remember, you are allowed to do less than what is humanly possible. Nothing says you have to function at 100 percent all the time.

One of the great things about being human is that you are allowed to make mistakes. It’s learning from the mistake that counts. Make a point to incorporate more laughter and fun into your life. Laughing is nature’s mood regulator—it increases dopamine, serotonin, and endorphins that can help you feel better.⁴

Keep in mind that your children learn from you. Make every effort to demonstrate resiliency and adaptability with good grace since your kids are watching and absorbing what they witness. It’s not necessary to hide your struggles with change. Acknowledge you’re having a hard time but that you expect to make the necessary modifications to see a situation through. I love the phrase “hard is not the same as bad.” In my house, we repeated those words often, especially when having to adapt to something new.

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Let’s discuss some specific changes you might encounter in your life with bleeding disorders.

Your provider suggests a new medication or treatment protocol such as starting prophylaxis, having a port placed or removed, or starting a new treatment product that is very different than what you have previously used.

This is an exciting time in the bleeding disorder world in that there are many new products and treatment plans in development. It’s great to have choices, but it can often feel as though they are coming too fast! However, just because medical advances and new protocols are coming along quickly, it doesn’t mean you are forced to accept them all immediately.

It’s okay to take a deep breath and spend time thinking before making decisions. Use this time to research the new product or treatment, and learn all you can. Ask many questions! Ask your providers to help you contact others who have made this change and get their input. And after you’ve spent this time researching and learning, it is perfectly okay to take whatever time is needed to go over the pros and cons of the suggested treatment.

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You may need to change hemophilia treatment centers due to relocation, or you’ve come to realize the one you’re using isn’t meeting your needs. 

This change can be very nerve-wracking. Research the available hemophilia teams in your area. The CDC website has a great directory for HTCs. Find it online at https://www.cdc.gov/ncbddd/hemophilia/htc.html. Call the center(s), and ask questions. Ask others in your area about their experiences with particular HTCs.

Your first visit to a new HTC may seem strange. Keep in mind every center operates uniquely. The new team may do some things in a familiar way and others completely differently. Give the personnel at the new center time to prove themselves. Remind yourself that different isn’t necessarily bad, it’s just different.

Sometimes the new provider will suggest a completely new treatment plan for you or your child. It’s okay to ask questions and express concerns if the proposed plan feels uncomfortable to you. It’s also okay to not accept a proposed change and to ask for more time before making a decision. It’s okay to say, “I need some time to think this over. For now, I want to leave things as they are.”

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One of the biggest changes is the transition for your child from pediatric to adult care. This happens at about 18-21 years old. This is not one change, but many, that should take place thoughtfully over time.

Some HTCs see children and adults in the same clinic setting with the same team members providing care to all patients. Some centers may have different doctors and nurses set up at different locations but share a physical therapist and social worker. Sometimes a young person transitioning into adulthood must go to a completely different center with all brand-new people to find the care appropriate for his or her age.

Whatever model is found in your center, please know that there are more differences to be found between pediatric care and adult care than just location or doctor. The philosophy of care changes with the move to an adult clinic. I once heard a speaker describe the difference as “Pediatric care is comfort care and adult care is cognitive care.” I believe we can bring comfort to the adult setting and cognitive care to the parents of pediatric patients.

The shift to adult care is one that parents can help prepare their child and direct them forward.

The term “cognitive care” is a phrase that denotes thinking and becoming knowledgeable about a subject and increased decision-making. In an adult HTC, your young adult will be expected to begin making decisions about his or her care. Prepare your child by helping him or her develop decision-making skills throughout their childhood.

Decision-making should be part of their lives from the earliest years. We can’t give a 3-year-old choice over bedtime or dinner time; however, we can offer 2 reasonable choices and invite the child to decide. As he or she ages, the choices should become more complex and more meaningful. The child learns to consider the options and make the choice that they desire. They also learn to live with their choices, as well as to adapt to the consequences of their choices if needed.

Help your child become an accountable young person by giving them increasing responsibility in the home and family life. Assigning increasingly complex chores as they age teaches them that they have an important role in the family and ultimately in the world. When we do everything for our kids, we are indirectly teaching them their contribution doesn’t count.⁵

As your child grows, speak with him or her about their bleeding disorder. Do it in a positive and age-appropriate way. Having been a preschool teacher many years ago, I learned the maxim that explanations to children should contain 1 word for each year of the child’s life. That means that we should use 3-word descriptions for a 3-year-old and 4 words for a 4-year-old. It can take some thought to come up with short explanations, but it avoids having the child lose attentiveness as you talk. Of course, the teaching you do will contain more words the older the child becomes.

During the early years, your child should learn to say the name of their bleeding disorder and if it is mild, moderate, or severe. They should learn to name their treatment product. Your very young child will not be able to recite dose and frequency, but this can be added as the child matures. Your child should learn to inventory their factor and infusion supplies with you. A parent can make up a checklist for their child to use to determine what items are needed. The natural next step would be allowing your child to make the call to their pharmacy to order what they need (a parent should remain nearby or on the line with their child while they are learning this task).

Learning self-infusion is a huge achievement in the life of a child with a bleeding disorder, and it leads to large gains in self-care ability. If your child receives regular infusions to prevent bleeding (prophylaxis) or is infused on-demand, they should be involved in the infusion process. The youngest child can take their factor and supplies out and set up the infusion area. Later, they can learn to mix the product, then draw it up. 

A big step in self-infusion is learning to identify a vein. Help your child become familiar with his/her veins. NEVER tell a child with a bleeding disorder that he or she has “no veins” or “terrible veins.” If veins are difficult to find or access, explain they will get bigger and easier to access as the child grows. It is okay to say, “Your veins are hiding today. We’ll keep looking to see where they’ve gone.”

Allowing your child to attend a bleeding disorders camp will have several benefits including learning he or she is not alone in having a bleeding disorder and in needing infusions. Your child will see other kids infusing and will learn from them. This is one time when peer pressure is a positive thing; many kids learn to infuse at camp because their friends are doing it! Self-confidence is gained when a child learns they can manage their infusions.

Talk to your child about what you have learned at a clinic visit or what you have researched about new treatment protocols and medications. Gradually, and as they are capable of handling it, the responsibility for their bleeding disorder care should be transferred to him or her. This will happen at different ages for different children. Use your judgment for these transitions, and keep an open mind. Consider reaching out to others who may have recently gone through this process.

Transitioning to adult medical care should not mean your young adult must handle everything entirely on his or her own. Make it clear you have many years of experience in managing a bleeding disorder (theirs), and you are still available to help and give advice. However, you have to trust in their ability to take over their medical care. Ask questions about how they are feeling and if they would like some input or suggestions from you, but do not criticize their handling of things. They will learn, sometimes through trial and error!

Helping your child as he or she matures through adolescence to adulthood can be stressful. This transition involves many adaptations, some unexpected, for both parents and child. You can use some of the tips in this article and apply them to other sudden adaptations. A really great resource for learning about and helping your child with healthcare transition is www.gottransition.org.

Don’t forget... ask for help! Trusted friends and family members as well as your hemophilia team can be a great resource to support you and your loved ones throughout all of life’s changes!

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About Judy Kauffman RN, MS, CPNP

Judy Kauffman is an advanced nurse practitioner specializing in bleeding disorders. A former kindergarten teacher, she earned a Master’s in Nursing from Georgia State University and serves as Hemophilia Nurse Coordinator at UC Davis Hemostasis and Thrombosis Center in Sacramento, CA. Judy has also worked as a Pediatric Hematology/ Oncology Nurse at Emory University’s Children’s Healthcare of Atlanta, GA, as a Pediatric Nurse Practitioner at Children’s Mercy Hospital HTC in Kansas City, MO, and as a Clinical Support Specialist with a hemophilia pharmaceutical providing education to patients, families, medical providers, and 3rd party payors.

Judy has spoken nationally and internationally, served on committees with NHF and Maternal Child Health Bureau Nurse Working Group for Region 7 and the Great Plains Region, has been instrumental in developing research projects, and has written journal articles. Her passion is teaching others about bleeding disorders so they can live their best lives!

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References

1. Clark, Val. “Different Types of Transitions in Child Development.” Twinkl.com, 2020, www.twinkl.com/blog/different-types-of-transitions-in-child-development.

2. Sandford, K. “Adjusting to Change / Life Transitions.” Lifehack, Lifehack, 12 Jan. 2021, www.lifehack.org/372463/why-you-need-adapt-change.

3. Leinwand, L. “Adjusting to Change / Life Transitions.” Therapy for Change, Therapist for Change and Life Transitions, GoodTherapy, 2020, www.goodtherapy.org/learn-about-therapy/issues/change.

4. Tasler, N. “How to Get Better at Dealing with Change.” Harvard Business Review, 5 Apr. 2017, hbr.org/2016/09/how-to-get-better-at-dealing-with-change.

5. Ginsburg, K. “The 7 C’s of Resilience.” Gold Coast Psychologists, 14 Dec. 2013, cbtprofessionals.com.au/the-7-cs-of-resilience/.

Woodstock, Hemophilia, AND Freedom

By Jonathan Alan Hill

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This week is the 52nd anniversary of Woodstock. This piece was written 2 years ago to celebrate its 50th anniversary.

In celebration of the 50th anniversary of Woodstock, I watched the PBS documentary, “Woodstock: Three Days That Defined a Generation.”

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In August 1969, over a half million people descended on a farm in rural upstate New York for an art and music festival. The promoters were not prepared for a crowd that size. 

They did not have enough food, supplies or medical personnel so they were forced to fly staff, volunteers, and even the performers in by helicopter since the roads were closed by all the attendees’ abandoned vehicles. Amazingly there were only two deaths: a sleeping teenager crushed by a tractor and a heroin overdose.

In the section about the medical crisis, the documentary briefly showed the Woodstock Medical Log from the first aid center. Listed among the many foot injuries, abrasions, and puncture wounds was the entry of a person treated for hemophilia. That caught my eye.

These were the early days of hemophilia treatment. Factor concentrate did not exist yet, and cryoprecipitate had just been developed in 1965. Hemophilia treatment centers were not yet established, and self-infusion was still years away. Yet here was record of a person with hemophilia at Woodstock. I could not find any more information about the patient’s treatment but clearly, they did not die at Woodstock.

I often talk about my generation as trailblazers of hemophilia. We were the first to have HTCs, self-infusion and did things that no one had seen hemophilia patients do before, but here was proof that someone with hemophilia went to the world’s greatest music festival in 1969 (the year of my birth). 

He would have had to walk miles to get to the farm from where traffic was stopped. He would have had to camp two or three nights with limited supplies. Many of the attendees were barefoot accounting for the many foot injuries. It is hard to imagine a person with hemophilia walking around barefoot without a bleed. This is just amazing to me. Here was proof of a real trailblazer in the counterculture of the late 1960s.

In my mind’s eye, I can see my two older blood brothers Mike and Val hitchhiking to the festival from Buffalo. I see them standing for hours each day listening to the likes of Richie Havens, Santana, Grateful Dead, The Who, Jefferson Airplane, Janis Joplin, Crosby, Stills and Nash (their first performance!), and of course Jimi Hendrix. Sleeping in tents near the dairy farm and grooving out to the music and art.

The idea of a person with hemophilia going to Woodstock, for me, is the definition of freedom. All my respect to the hemophilia patient who undertook this adventure.

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Hi Dad! A Son with Hemophilia Pays Tribute to His Dad

By Felix Garcia

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Although I’m not an athlete, I always get a kick out of professional and college athletes who turn to the camera and say, “Hi Mom!” Often though, it’s most likely their dad who taught them the sport, pushed them to exceed, and helped them make decisions leading to that position. Yet, they all say, “Hi Mom!”

It’s funny to me! Let’s be honest, it’s such tradition now that if you didn’t, even your dad would probably scold you, “What’s the matter with you, son? Why didn’t you give a shout-out to your mom?” 

In the world of bleeding disorders, it’s not much different except for my generation and many before me, it was all because of mom.

Mom taught us how to play the bleeding disorder game - she pushed us to infuse and coached us to not challenge our body beyond what it could do. And yes, she is probably the reason most of us are still here today. I speak from experience – well, at least from my own experience I should say!

I was one of the lucky few that grew up in the ’70s and ’80s with a dad who made sure I infused. He was great at it. He guided me and got me to infuse when I had to. Back then it was when I had an active bleed, prophylactic treatment was a dream and joint damage the reality. 

Growing up, we didn’t have local bleeding disorders meetings - in person or on Zoom. Hold on to your hats, kids… We didn’t even have the Internet (please insert “shocked” emoji here)! This means I didn’t have much to compare to until I was an adult and attended my first MANN meeting. For those of you too young to remember, MANN stood for Men’s Advocacy Network of NHF, a group founded in 1991 to bring together men with hemophilia and HIV/AIDS to advocate and provide support on a national level.

During these meetings, we shared childhood stories and myths and reminisced and joked about them. Though many of us had never talked before, we found we had many of the same superstitions. One that stood out was about not touching another needle beside the one you’re going to use. If you did, you were destined to blow a vein and would then need the extra needle you touched. A room full of grown men and most of us were still afraid to touch another needle package. Sheesh! 

Speaking with these other men, I also heard about the loving, devoted mothers in our community. I’d say more than 90% of the men raved about their moms. In the middle of the conversation, I decided to speak up and say how great my dad was. Wrong crowd. Few blood brothers held their dad in such high esteem as I did my father. Very few fathers had done the things my father did. Don’t get me wrong, my mother did all those wonderful, self-sacrificing, noble acts that the others did too. She unselfishly dedicated her life to raising a child with a chronic illness. 

My mom endured when told her 3-month-old son had severe hemophilia and would not live past the age of 18. She survived his two major head bleeds that almost took his life, first when he was 18 months old and then again in his early 20s. She suffered greatly when told her 11-year-old son was going to die of an AIDS-related illness because of the clotting factor they trustingly used. Yeah, my mom was just as big a rock star as any of those other mothers - she had her heart broken over and over because of me. 

Well, so did my dad. He held my mom when no one else was around. He cried with her when the pain was too much to bear, and he was her pillar of strength when that was what she needed. He chose never to give up no matter how many times his heart was shattered again and again with news that his son was going to die. 

More importantly to me despite the pain, my dad still taught me how to be a man. He taught me that no matter how much he hated the sight of blood and needles, I could always count on him to infuse me or hold me in the ER. He taught me whenever I had to be in the hospital after surgery, I still had to do my school assignments and read. He would show up with my homework and books. 

He was always the one I wanted to impress with my recovery. My dad was always there for me. When I had to have surgery as an adult, my dad taught me that he would still always be there for me, taking my kids to school and helping my family around the house. And he is still the one I want to impress with my recovery. 

I was lucky. Both my parents helped me become an adult who could manage his bleeding disorder. They both helped me become a better person. In my life, I was blessed with others who also mentored and helped me along the way. However, if having a bleeding disorder was a professional sport and the camera was on me for a brief moment, to my dad and to all the dads that help make men of their boys with hemophilia, I would say, “Hi Dad. Thank you. I love you.” 

This is dedicated to all the parents who raised a child with a chronic illness and who underwent heartache and tears to get their children to where they are today. We don’t always know when or how to say thank you and you may never know how deeply the appreciation extends, but words will never cover the moments you gave us, the life you preserved in us, and all the things we now as adults have come to realize.

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A Review: Crip Camp

By Rich Vogel

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What do you get when a bunch of kids with disabilities go away to camp, are free to be themselves, and form bonds and everlasting friendships? You just might get a group of kids who go on to change the world!

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That’s my takeaway from the inspirational Netflix documentary, Crip Camp. This film is rated “R” by the Motion Picture Association of America for “some language including sexual references.”

In 1971 a group of young people went to a camp for children with disabilities in upstate New York. Camp Jened was established in 1951 as a campground for people with disabilities - cerebral palsy, blind, deaf, epilepsy, and those stricken with polio, just to name a few. It was a place where kids could be kids, treated with kindness and humanity, unlike the real world where many were put in institutions and not allowed to go to school. As one person said, the problem is not with people living with disabilities, but people living without them – people who refuse to listen to those with disabilities or build a world that accommodates them, who turn a blind eye to their abuse, or limit their opportunities. 

The story is told through actual footage of that magical summer interspersed with current interviews with those kids from 50 years ago. We see bonds being made with lifelong friendships, meetings where every voice is heard, compassion, and even first crushes, all the things that go on at a typical camp. But this was the 1970’s. The war was going on in Vietnam, there were protests and there was a wind of change in the country. 

In 1973, President Nixon signed into law Section 504 of the Rehabilitation Act. Unfortunately, there were no regulations passed. No definition of what discrimination is for people with disabilities. 

When the Carter administration came into power still nothing was done. Joseph Califano, U.S. Secretary of Health, Education and Welfare, refused to sign meaningful regulations for Section 504 of the Rehabilitation Act of 1973. After an ultimatum and deadline, a group of activists with disabilities, led by camper Judy Heumann, staged a sit-in at the San Francisco Office of the U.S. Department of Health, Education and Welfare in order to get their voices heard.

The sit-in lasted 28 days, quite a feat for people in wheelchairs, many of whom needed assistance to eat and perform daily functions. In one scene, the Black Panthers are seen delivering food to the protesters. When asked why they were delivering food for free, they said because you are helping the community, trying to change the world. 

After mounting pressure around the country, Joseph Califano signed both Education of All Handicapped Children and Section 504 into law on April 28, 1977. It took another 11 years to get legislation introduced in Congress for the Americans with Disabilities Act and another 2 years before President Bush signed it into law in 1990 – nearly 20 years after that spark was lit for those young kids at Camp Jenard.

 This is an inspiring true story about friendship, perseverance, righting a wrong. Although the film is not about kids with bleeding disorders, it does highlight similar struggles. This is our story. The first residential summer camp, Bold Eagle Highlands, for persons with hemophilia was started in 1969 by Hemophilia Foundation of Michigan. 

Since then, many more camps have been created for kids with bleeding disorders and often their siblings. These camps promote independence by teaching self-infusion and leadership skills, guiding many to become camp counselors and advocates for the community, all while fostering camaraderie and lasting friendships with others in a secure and safe environment. 

These are just a few reasons why camp is so important for the bleeding disorder community. If you are contemplating sending your child to camp, watch this documentary. Your kid might just change the world.

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Meet the Team: Terry Stone

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BioMatrix is dedicated to making a difference in the bleeding disorders community. Our team of Regional Care Coordinators and Patient Care Specialists provide support that draws on personal experience and a genuine commitment to the bleeding disorders community. Our “Meet the Team” segment invites you to get to know our incredible staff a little bit better.

In this edition, we feature Terry Stone!

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Terry comes to our organization with years of experience in sales and public relations that started in the Washington DC tourism industry. However, after her son was born with hemophilia, she discovered a greater calling and acted on her new passion to serve patients dealing with chronic conditions and help to ensure they have education, support, and an enhanced quality of life.

Living in Manassas, Virginia, Terry and her husband of 36 years have a grown daughter, Michelle, who has two children of her own, and a 19-year-old son, Matthew. Terry has served on the Board of Directors for her local chapter and continues to be an involved member of the bleeding disorders community. As a Regional Care Coordinator at BioMatrix, Terry brings a feeling of family support and compassion to patients in Virginia, Maryland, and the Washington DC area.

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What is your connection to the bleeding disorders community?

My introduction to the bleeding disorders community was as abrupt as it was shocking. After more than seven years of wanting to grow our family, my husband and I were excited to welcome a new long-awaited son Matthew to our family in October 2001. Our then 14-year-old daughter Michelle would have the little brother she always dreamed of - a real live baby doll to love and rock to sleep. 

Something, however, was not quite right. During a feeding not long after birth, I noticed a large bloodstain on Matthew’s blanket and alerted the nurse. After a trip to the NICU and 48 very long hours, the diagnosis was a tough one, “your son has severe hemophilia B.” With those simple words, life changed for us. Although we felt sad and alone, we soon realized there was a community of families just like us, ready to embrace, teach, and support us as we struggled to navigate our way to what would be our family’s new normal.

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What brought you to BioMatrix?

My family was warmly embraced by the local hemophilia chapter and other families in the community, and I was so inspired that I transitioned my career path to serve a community that I unexpectedly found myself a part of. I experienced firsthand how education and support can make a difference in the lives of patients dealing with a chronic health concern, and I wanted to offer the same. After working for another specialty pharmacy, I found myself a home with BioMatrix in 2011.

I reflect on my former career as a sales director for a sightseeing and charter bus company, then go back even further to working after school at my parent’s bus station selling tickets and stocking soda machines. I grew up in transportation, and although a career in tourism in our Nation’s Capital was really fun, I much prefer helping patients to transport themselves to successful therapy at home and to their best life possible.

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How do you feel you are Making a Difference?

Patients are so unique in every way. It’s my mission to learn all about their needs and challenges so that we ensure they have what they need to be comfortable with their home therapy and educated as to all of the great resources that are available to them. You need to take great care of the patient, but don’t forget to embrace the entire family so that together they are supported, educated, and resilient.

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What is the most cherished part of your job?

There’s no better gift than making a difference in someone’s life, particularly during a time of great need or concern. I have found immense joy and a true calling assisting patients and their families who are navigating their own path with other chronic disorders. 

I find that although the diagnosis of their loved one may be different than my own family; our concerns as parents, family members, and caregivers are typically the same. We worry about health insurance, copayments, experienced care, and how to juggle doctor appointments, work, and after-school activities. Living with a chronic disorder and the challenges and blessings it brings are so uniquely personal. Yes, there can be blessings too!

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What personal accomplishment are you most proud of?

My daughter Michelle and I wrote a book for the hemophilia community called This is My Something. When Matthew was young, we always explained his hemophilia as a unique part of who he is. Matthew came to understand that everyone has a “something” and hemophilia was just his, and that was cool. From this lesson he never felt odd or different, he just felt like, well… MATT! So, our story is about a little boy who learns to embrace his “something.” With support from BioMatrix who printed the book, it’s now available for families to share and enjoy. It’s a wonderful story for parents to read to their children, or to share at school as part of their school and class education.

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What would you say to a newly diagnosed family?

You are not alone! There is a community of folks who share this path through life, so join up, walk with them, and share the journey. Certainly, I wish my family was not affected by hemophilia, but what a gift it has been to have met so many amazing people along the way, and the joy of so many experiences we have shared as a family. And let’s not forget hemophilia camp for Matthew, which was a monumental event every year for him. He counted the days until camp each summer and has made lifelong friends. Living with chronic illness comes with challenges. I get it. Everyone has a “something,” so embrace it!

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Spring Cleaning Medical Supplies

By Sarah Henderson

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Spring is in the air! As windows are thrown open to let the fresh air in, many are inspired to do a deep cleaning around the house. As you tackle your spring cleaning tasks, make sure to give your medicine storage area be it a cabinet, shelf, drawer or closet a thorough inspection as well.

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While I love the feeling of a good cleaning, I love even more the feeling I get when I look at my clean and orderly factor and supply storage! Here are some tips for spring cleaning your medicine storage: 

• First and foremost, store all medications in a cool, dry, and dark area that is inaccessible to children. Avoid storing in a bathroom cabinet where humidity, heat, and light can cause medications to lose their efficacy.

• Check expiration dates on everything. Medications lose effectiveness and can even become toxic once expired.

• Check all ancillary supplies - saline, butterfly needles, port supplies, disinfectant swabs, etc., for a printed expiration date. Yes, many supplies may also have expiration dates. 

• Arrange clotting factor so the boxes with the longest expiration date are in the back and factor expiring soonest is at the front to be used first. This will keep the stock fresh and lessen the chance of allowing valuable factor to go to waste. Each time a new factor order is received, place the new boxes behind the existing ones. 

• Take this time to double-check manufacturer recommendations on how, where, and how long to properly store clotting factor and medications.

• If a pump is used to infuse, be sure to insert fresh batteries and determine if it’s time for the pump to be calibrated or updated. 

• Go through all medications that may be used infrequently but are just as important to always have at their best. For example, if Amicar is kept on-hand, reorder as it nears its expiration date. Then when needed, it will be available and at its best efficacy.

• Check any topicals, over-the-counter medications, vitamins, and supplements as well. If there is any change in color or smell, toss it.

• If a medication is not in its original container and it isn’t 100% known what it is, dispose of it.

• For any medications with a “use within X days of opening,” write the date it was first opened on the lid, so it’s easy to remember when that was.

• Dispose of medications properly. Here are a few suggestions on how to determine the best way to dispose of them:

  • The FDA offers advice on how to properly discard medications. Visit: www.fda.gov/ForConsumers/ConsumerUpdates/ucm101653.htm 

  • Law enforcement sponsors a drug take-back day where unneeded prescription medication can be safely disposed of. Contact the Drug Enforcement Agency at 1-800-882-9539 or visit their website for dates and locations: https://www.deadiversion.usdoj.gov/drug_disposal/takeback/index.html 

  • Local police stations will often properly discard old medications as well. 

  • Many neighborhood pharmacies offer disposal programs. Visit http://disposemymeds.org to find a location near you.

• Consider donating factor product that has not expired but will no longer be used to Save One Life, where it will be sent to help patients in developing countries: https://saveonelife.net/how-you-can-help/project-share

Now that the task is complete, sit back, congratulate yourself on a job well done, and relax!

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References

“Where and How to Dispose of Unused Medicines.” U.S. Food and Drug Administration, FDA, www.fda.gov/consumers/consumer-updates/where-and-how-dispose-unused-medicines 

Nkf. “6 Tips to Help ‘Spring Clean’ Your Medicine Cabinet.” National Kidney Foundation, 30 Mar. 2018, http://www.kidney.org/newsletter/6-tips-to-help-“spring-clean”-your-medicine-cabinet

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A Mother’s Love

By Eva Kraemer and Kelly Gonzalez

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For most, mothers are everything. They are the guiding light propelling their children toward their destiny. They are the safe, warm blanket that wraps them when they fall. They are the protectors and disciplinarians. They are the source of encouragement and the teachers of independence.

But what happens when a curveball is thrown into the mix? When child-rearing may include and be complicated by having to be cautious about everyday things, many hospital visits, countless factor infusions, and a more-than-average amount of worrying? Mothers of children with hemophilia or other bleeding disorders don’t give up - they become resilient. 

Stephanie R., Victoria K. and Genny M. - three women from various walks of life decided their genetic make-up would not hinder their childbearing dreams. They persisted and started families of their own regardless of the chances of passing along a bleeding disorder. An intimidating task for some, but an inspirational journey for others. 

For context, hemophilia is passed down on the mother’s chromosome. This means when a woman who is a carrier of hemophilia conceives, there is a chance she will pass on this genetic disorder to her child. Hemophilia is substantially more prominent in males because it is a recessive sex-linked disorder, but females may also be affected. Deciding to bring a child into this world knowing your genetics may greatly impact your child’s life is even more daunting. 

Stephanie is from Michigan and has been married to her husband, Jason, for 15 years. They have 4 children, Addison, Ella, Lila, and Ben, who has severe hemophilia. Stephanie has been aware of the bleeding disorders world her whole life because of her family’s involvement. “I’ve been part of my brother’s journey, my uncle, my cousin... I have seen the progression of the effects of hemophilia from the older generation to my brother’s generation, and I wasn’t as worried,” recalls Stephanie. “To me, there were worse things to have.”  

Victoria and her husband, David, have been married for 20 years and are parents to 16-year-old twins, daughter Grace, and son William who has severe hemophilia. Victoria always knew she was a carrier because her dad had severe hemophilia. She was diagnosed as having mild hemophilia when she was just 10 years old. 

Married for 15 years, Genny and John from Illinois were college sweethearts. They have a 6-year-old son, Johnny, who has severe hemophilia. Genny shared, “I knew hemophilia ran in my family since my mom had 2 brothers and a couple of nephews with hemophilia. One of my uncles died as a toddler from a head bleed, and we lost one uncle to the HIV he contracted from his clotting factor back in the 1980s. I grew up thinking I couldn’t be a carrier since my mom supposedly tested negative when she was family planning back in the 1970s.” 

When bringing up the obstacle of family planning with their respective spouses, the women were informed about the possible risk associated with conceiving a boy. With their partners, each couple took fate into their own hands. 

Stephanie shared that there was almost no conversation because her partner met her family at the very beginning of their relationship and knew right off the bat of their struggles with hemophilia. When asked about having children, Stephanie responded, “We knew God would guide us.” 

Initially, Victoria didn’t want children because as an obligate carrier, she knew the chances of having a child with hemophilia were great. Her husband, however, was undeterred by hemophilia - he wanted children. Eventually, Victoria became pregnant with twins. After bringing her children into the world, Victoria, with tears in her eyes, asked the doctor if her son had hemophilia. When the doctor replied “yes,” her husband responded with a statement that would guide them through raising their children, “Hemophilia is like blue eyes, it’s just DNA.” 

Genny’s sister had a child with hemophilia. She realized her mom’s carrier testing was incorrect and that she had a 50/50 chance of being a carrier. “My nephew was born and diagnosed with hemophilia less than a year after John and I started dating. It was very difficult watching my young nephew struggle with bleed-after-bleed and surgery-after-surgery since he battled inhibitors the majority of his life,” stated Genny. “After seeing what my nephew, uncle, and others have gone through, we struggled with knowingly taking the risk of having a child whose quality of life could be greatly impacted by hemophilia. Nevertheless, we still longed to have children.”

As for starting a life with a newborn diagnosed with hemophilia, each mother had her own journey to dictate. They kept conversations going about hemophilia with their partners and families. They each discovered they weren’t about to let a genetic disorder dictate the way they or their child was going to live their life. Those conversations aren’t easy and require openness from both parents.

Stephanie’s family focused on immersion. “This is our life, our normal, our something unique,” she recalls. There was no specific incident or time, but she and Jason jumped in to learn and understand everything they could about hemophilia. 

Learning from past experiences was the way to go in Victoria’s family. David learned about hemophilia through his relationship and experiences with Victoria’s dad before he passed in 1993. Even though he had not experienced hemophilia firsthand growing up as Victoria had, together they have handled every incident and challenge as it has come along. 

Genny feels she is blessed as her husband is very knowledgeable and engaged. She recalls before having their own child, her husband was one of the first people in the family to learn how to infuse her nephew. He had even gone on field trips and camping with him without fearing his condition. 

Family planning isn’t always easy when you have a genetic disorder. There are unpredictable events that can impact life, but these mothers have advice for anyone considering having a child. 

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“Children are a blessing to our family. I would suggest families with a known carrier mother prepare to have a child with a bleeding disorder by getting involved with your local chapter, educating yourself, and learning to be an advocate as you plan and make decisions. Ask questions about doctors and treatment options – take responsibility for the preparation, but have faith everything will be ok,” explains Stephanie. 

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“Do all the research you need and talk to your partner. Do it!” exclaims Victoria. 

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“Follow your heart. Do what’s best for you and your family,” states Genny. “If you are faced with bleeding disorders, don’t go it alone. Build a squad by meeting others through your local and national bleeding disorders organizations, and learn as much as you can.” 

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If you know you are a carrier, family planning doesn’t have to be scary or daunting. Get engaged, get educated, take action, and plan for the best. No matter what, know you are among a community of resilient hemophilia moms who will help guide the way. Learn from those who have lived through the experiences in which you may find yourself.

To all the moms in our community and from all of us at BioMatrix, Happy Mother’s Day!

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Be an Advocate: The Ins and Outs of Making Access to Life-saving Medications a Priority

By Shelby Smoak, PhD

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I’ve said this before, even in this newsletter, but I will say it again: Anyone with a chronic illness must become their own best advocate.

Sometimes this advocacy comes in the form of promoting for our needs with a physician or other health care provider. To all the phlebotomists who I see several times in a year, I thank you for listening to my unending requests to use 23g needles over the much larger, standard 16g.

Advocacy is personal and constant. Sometimes however, advocacy requires more of a public, social dynamic. This article addresses that aspect, asking that everyone with an expensive chronic condition join in a push against the looming dominance of Copay Accumulator Adjuster policies.

As we move into the new year, we need to be wondering:  Is there an accumulator adjuster policy in my 2021 insurance plan? Finding the answer and making a personal decision about your plan choice based on an accumulator adjuster is still an example of private, personal advocacy, and is of vital importance to your continued access to affordable health care. 

In our last BioMatrix newsletter, we published a full spread on Copay Accumulator Redux and on navigating those in 2021. I won’t revisit that information, but if you missed it, you can read it online at https://www.biomatrixsprx.com/bleeding-disorders-publications  (BioMatrix News - Volume 15, Issue 4)

Let’s take this piece of the insurance forward and consider how you can transform personal advocacy on copay accumulators into state and national advocacy.

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Why should I advocate for ending copay accumulator adjuster insurance policies?

There are several reasons 2021 should be a year to advocate against copay accumulator adjuster policies:

1. New rules have allowed insurers to apply these policies more freely and widely, making it more likely community members will be impacted.

2. Accumulator policies can make medicines unaffordable for many families, putting their health at risk.

3. Accumulator policies can jeopardize the financial well-being of a family, forcing them to choose between paying for life-saving medicines or for food or bills.

4. Advocacy will be required at the state and federal level, as these oversee different insurance plans.

5. There is currently no other issue that would perhaps put people with chronic illness at greater financial or health risk than this.

6. Advocacy here helps you, your family, and everyone in the rare disease community who depend on medications without generic alternatives.

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How do I become a state advocate?

A great place to start flexing your advocacy is at the state level. Already four states—Virginia, West Virginia, Illinois, and Arizona—have passed copay accumulator bans, all of which were achieved through advocacy. Here in Virginia where I live, the local bleeding disorder chapters [Virginia Hemophilia Foundation and Hemophilia Association of the Capital Area pushed our community to contact our state legislators about the copay bill under consideration. They made this a priority during their advocacy days, and they partnered with other rare disease groups to create a LOUD and resounding voice against the copay accumulator adjuster. 

This type of advocacy depends upon volume and numbers, so while you may sometimes feel adding your voice may not matter, that is just not true. This kind of thinking falls into a classical paradox known as the Sorites Paradox, or, more commonly, The Argument of the Heap. The paradox claims that 1 person removed or added to a group doesn’t matter, but the paradox is that group, the heap, really doesn’t exist: a heap is simply a term for the collection of individual parts, each independent but essential. Removing or adding an individual to that heap substantially changes it. If you’ve lost me on the philosophy there, it’s really just to say everyone matters and in advocacy, every voice matters.

Here are a few steps for taking state action:

1. Reach out to your local chapter and ask about any pending copay accumulator state bills. If your state doesn’t have a current bill under consideration, ask about a group or coalition that may be drafting or seeking sponsorship for a bill. You may also reach out to HFA and NHF who have policy divisions following issues at a state level. The education team here at BioMatrix is also a great resource. We have contacts in each state who follow this issue and would be happy to relay the information to you. Just email us at education@biomatrixsprx.com. 

2. Use an online tool to find and contact your state legislators. There are several online tools for finding your representatives if you google “find my representatives” and enter your state, but HFA has a great one on their website, www.hemophiliafed.org. On their site, hover your cursor over “For Patients and Families” and click “Take Action Center.” From there, scroll down until you see “Find My Legislator.” Enter your information and the tool will show all your representatives from a national and state level. HFA even provides direct links to your representative pages where you can email them and also sign up for their office’s newsletters to keep you even more informed.

3. Write a short email asking to support a bill if your state has one pending. Check out our handy template at the end of  this article for advice on writing this.

4. Write to your state representative about sponsoring a copay accumulator bill if none is pending. Unfortunately, this is where things start and would indicate your state advocacy has a bit more work to do. Don’t be disheartened if this is the case; all current laws started here, and all bills also start here. However, be sure you have reached out to your chapter or a group like HFA to find coordinated efforts that may be going on. Often on issues like this, certain state legislators will already be indicated as favorable to supporting a bill and that’s where you’d want to focus these initial energies. This may be a representative other than your own. Once a sponsor is secured, you work up the ladder to bring more representatives on board supporting the cause.

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How do I become a national advocate?

Advocacy at the national or federal level is very similar to that at the state level. The key steps are essentially the same except you will now be reaching out to your Congressional House and Senate representatives. Moreover, there is already a bill in the House that needs support!

1. Use an online tool to find and contact your Congressional House representative via email or phone. See above for advice.

2. Ask your House representative to support House bill HR 7647. This bill, introduced by Rep. Donald McEachin (D-VA), Rep. Rodney David (R-IL) and Rep. Bonnie Watson Coleman (NJ-12) delays the implementation of copay accumulator adjusters for 12 months beyond the end of the COVID-19 pandemic. While the bill does not seek to terminate copay accumulator policies as many of us would like, it is a politically savvy move to try and recruit bipartisan support, for which HR 7647 congressional representatives on both sides can feel good about supporting a temporary delay related to the pandemic as opposed to a full commitment to overturning an insurance policy. As advocacy goes, it would give the community a foothold in the argument if HR 7647 were to pass.

3. Contact your Senate representative and let them know about HR 7647 and ask for a companion Senate bill, and/or for support for HR 7647 when it leaves the House.

4. Continue following up with both representatives throughout the year. Here, you must walk the balance between concerned advocate and over-zealous disruptor; in other words, you wouldn’t want to email your representatives daily, but once is not enough to show them your concern. I like to say you should be polite and courteous and follow up just to be “annoying enough,” perhaps every month or so.

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Why should I participate in state and national advocacy?

For an issue like copay accumulator adjusters, it’s imperative to participate in advocacy at the state and national level as the laws you are seeking would cover accumulator policies in different plans. State laws will offer protections from accumulator policies in state-run and ACA plans, but they will not protect people enrolled in large group plans, such as those found in big companies that have employees in more than one state. National, federal law, however, will cover accumulator policies in those large group insurance plans, but, likewise, will be ineffective for state-run plans.

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When should I start?

Now! Today! The right time is always right now!

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What if I’m not a great writer or speaker?

This doesn’t matter. Representatives hear from hundreds of thousands of constituents just like you. Follow the ABCs here and you’ll be fine:

1. Tell your story about how life-saving medicines are important to you or a loved one. 

2. Explain to your representative why copay accumulator adjusters are dangerous to you or your loved one.

3. Ask them to support a bill against copay accumulator adjusters.

That’s it! Your voice will be heard, and advocacy will do its job of improving our lives and our health!

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Advocacy Letter Template

This template serves as an example of how to write to a legislative representative regarding HR 7647. Try to keep your letter to one page, be polite, be specific, and share your personal story.

GREETING
(Use “Dear” as it is best accepted formal greeting and use titles, which can be shorten to Rep. or Sen.)

Dear Representative ____________ or Senator ____________ : 

OPENING
(Be polite and direct about why you are writing. Change to suit your needs. Keep it short and to the point - 2-3 sentences.)

I am writing to ask for your support of HR 7647. I (my child, my loved one, etc.) have (has) _________ (severity and diagnosis), which is a rare bleeding disorder. My hemophilia (or other diagnosis) is treated with (medication name), an extremely expensive medication used to control bleeding – there is no generic form of this (injectable) medicine. I rely on manufacturer copay cards to help pay for my life-saving medication, but insurance company copay accumulator policies have made my medication difficult to afford. HR 7647 addresses this issue and would allow me to receive the vital medicine I (my child) need(s). 

BODY
(The body of the letter needs to include your personal story. Listed below are some tips to help provide content. Be specific and provide an example. Keep this to 2 paragraphs, 4-6 sentences each.)

Paragraph 1

• How long have you had/cared for someone with hemophilia/vWD and how long have you been reliant upon life-saving medicine? 

• On average, how much does your medication cost per month/per year? 

• How much is your yearly deductible and out-of-pocket?

• Explain how being able to use a copay card in the past made a difference - when you ordered, used the card, and were able to receive medication.

• Explain why you may be unable to obtain this medication without the help of a copay card being applied toward meeting your out-of-pocket.

Paragraph 2

• Speak about what would happen to you/your child without bleeding disorders medication.

• If you have an example where medicine saved your/your child’s life or prevented serious ramifications, include it in a few sentences. This paints a human portrait for your legislative representative.

CLOSING
(Keep it short and direct. Restate the bill you would like your legislator to support and thank them.)

• This is a very expensive disease whose outcome would be disabling or even fatal without life-saving medicines.

• The financial burden and affordability of treatment has become increasingly difficult/impossible due to insurance companies’ copay accumulator policies. 

• Thank you very much for your consideration and time. 

• Please feel free to contact me for more of an explanation on how HR 7647 affects me. I look forward to hearing from you.

SIGNATURE
Include all of your contact information. While it’s unlikely you will be called, you just might. Include your address as it will confirm your constituency.

Sincerely,

Name
Address
Home and cell phone
Email

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Our entire team is committed to maintaining the health and wellbeing of those we are privileged to serve.

For updated information regarding our response to developments related to COVID-19, a letter from our CEO, and early refill requests, please click here.

Stay healthy, and be well.

We are with you and will get through this together.

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Quality Time with Your Kids

By Sarah Henderson

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We have learned a great deal this past year about not taking people for granted and making the most of every moment we have with those we hold dear.

Quarantines, lockdowns, virtual learning and working from home have given us a mountain of time to be home with our loved ones. However, when we feel our time together seems endless, we may begin to take it for granted. Are you taking the time to spend true quality one-on-one time with your kids? Even though right now you likely have a vast quantity of time with them….is it quality? Here are some easy ways to make sure that the time you are spending together is quality:

• Have a specific day set aside that each child can look forward to. Some people pick a specific day of the week, like every Tuesday, or a set date, such as the child’s birth date. For example, a child born on the 12th would have their special one-on-one time on the 12th of each month. For busier or bigger families, it may mean only one special day per month – but all the more important to stick with it and make it matter. 

• Schedule your time as you would any other meeting and stick to it! 

• Let your child know you are looking forward to your time with them.

• Turn monitors and screens off – be in the moment only with your child.

• Don’t answer the phone. Let them know that they are your priority.

• Make your scheduled time all about your time with only that child – no other siblings, cousins, or friends. For older siblings, it could mean being with them after the younger children go to bed or are down for a nap. Maybe it means tag-teaming parents vs kids. The important thing is to figure out what works best for you and your family. 

• Ask questions about their day, their interests and their dreams. Don’t use this as a teaching moment or time to lecture – use it as a moment to listen, get to know them, and let them open up to you. Avoid topics that cause friction or conflict between you. 

• Be flexible, be creative.

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So much of our world today revolves around computer, phone, or television screens. Don’t let these screens take away the value of your time together. It’s also important not to fall into a cycle of trying to one-up or go over the top with activities and time spent together. Your time together should be something valued purely for the time spent, not money spent.

The options are limitless, but here are a few ideas to inspire you for screen-free entertainment:

• Go for a walk, bike ride, or roller skate

• Go for ice cream or make ice cream sundaes at home

• Throw a football or Frisbee around in the backyard

• Go fishing

• Go swimming

• Do a puzzle

• Have a picnic

• Bake a dessert together

• Play flashlight tag

• Play a board game

• Reminisce as you look through old photos together

• Build a snow fort and then hang out in it together

• Play basketball

• Make s’mores around a fire pit

• Teach your child a game you enjoyed when you were their age

• Learn a new art together – origami, painting, pottery

• Have a spa day

• Visit an animal shelter

• Try a new recipe and then enjoy eating it together

• Stargaze while enjoying a thermos of hot cocoa

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An article in the Washington Post points out, “The more time a teen spends engaged with their mother, the fewer instances of delinquent behavior. And the more time teens spend with both their parents together in family time, such as during meals, the less likely they are to abuse drugs and alcohol and engage in other risky or illegal behavior. They also achieve higher math scores.” Why not take advantage of this opportunity to spend time with your child? You will never get this time back and you’ll never regret the time invested in a relationship with your child.

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Reference:

https://www.washingtonpost.com/local/making-time-for-kids-study-says-quality-trumps-quantity/2015/03/28/10813192-d378-11e4-8fce-3941fc548f1c_story.html

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Our entire team is committed to maintaining the health and wellbeing of those we are privileged to serve.

For updated information regarding our response to developments related to COVID-19, a letter from our CEO, and early refill requests, please click here.

Stay healthy, and be well.

We are with you and will get through this together.

---

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

The Royals

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Her reign was the longest of any female monarch in history. As Queen, her land entered a time that saw progress and growth in nearly every aspect of society. From industry and science to culture and politics, her rule ushered in an era that would later bear her name, Victoria. Taking the throne at the age of eighteen and ruling for over sixty-three years, Queen Victoria is perhaps one of the most iconic figures in the history of the British Monarchy.

Under Victoria, the British Empire rose to become a leading global power. One way the monarchy sought to secure political alliances came through strategic marriages between the ruling royal families. Queen Victoria became known as The Grandmother of Europe as some of her 9 children and 42 grandchildren married into royal families across the continent. It was through these marriages that Victoria not only secured political clout, but such practice was also the cause for the passing of a condition the royal monarchy often tried to hide, hemophilia. A carrier of what was recently proven to be hemophilia B, Queen Victoria inadvertently spread the condition from the United Kingdom to the royal houses of Germany, Spain and Russia. The line of princes with hemophilia in Europe led to the bleeding disorder being coined as The Royal Disease.

Though they lived lavish courtly lifestyles, life for Victoria’s descendants with hemophilia was not easy. At a time when doctors knew little about the condition, there was not much families could do for their affected children. Though great care was taken to protect the princes, unfortunately many did not live to see adulthood. The following is an account of “The Royal Disease” as found in some of the major ruling monarchies of Europe.

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The United Kingdom

Prince Leopold, Duke of Albany

Prince Leopold was born April 7, 1853 at Buckingham Palace. He was Victoria’s 8th child and her only son with hemophilia. The condition caused Victoria much anxiety, prompting her to keep the prince close to her side. He was followed in permanent attendance by a number of physicians. Victoria thought it unnecessary for him to leave the home and even encouraged him not to marry or have children.

Unable to pursue a military career because of his condition, Leopold entered into the Christ Church of Oxford where he studied a wide variety of subjects. He earned an honorary law degree and went on to become a patron of the arts and literature. He also served as the unofficial secretary to his mother.

Despite the wishes of his mother, Leopold sought marriage and considered it his only hope for independence. His health condition caused some difficulty in finding a wife. After a number of rejections, Leopold eventually married Princess Helene Friederike, a member of the German royal family. Though their marriage was brief, the couple was happy and gave birth to a daughter, Alice, Countess of Athlone, and a son, Charles Edward.

Because of joint pain associated with his hemophilia, the winter months were always difficult for Leopold. In February 1884, while his wife was still pregnant with Charles Edward, Leopold was encouraged by his physician to spend some time in the warmer climate of Cannes, France. Just weeks later on March 27, Leopold suffered a fall at a yacht club in Cannes and injured his knee. He passed away early the next morning from a combination of internal bleeding and a fatal mixture of the pain medications he received.

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Prince Rupert of Teck

Born on April 24, 1907, Prince Rupert was the son of Princess Alice, Leopold’s daughter. Rupert was a studious young man and attended Eton and Trinity Colleges at Cambridge University. On April 15, 1928, while traveling in Bellevue-sur-Saone, France, Rupert was in a car accident. Five days later, just four days before his 21st birthday, Rupert died of a brain hemorrhage.

Hemophilia in the royal family did not end with the princes most closely tied to the British Royal Family. Queen Victoria’s daughters, Princess Beatrice and Princess Alice, would later prove to also be carriers of the condition, and would pass the disorder to other ruling families in Europe.

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Germany

Hemophilia found its way to the German Empire with the marriages of Queen Victoria’s daughters, Princess Beatrice and Princess Alice to German suitors. Beatrice had two boys with the condition, Leopold and Maurice. Princess Alice had six children to include one son with hemophilia, Prince Frederick, and two daughters that were carriers of hemophilia, Princess Irene and Princess Alice. Irene would go on to have two children with the disorder, Prince Waldemar and Prince Henry.

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Prince Leopold Mountbatten

Prince Leopold, the son of Princess Beatrice and Prince Henry of Battenberg, was born on May 21, 1889. He served in the King’s Royal Rifle Corps, where he attained the rank of Major. Leopold was also a member of both the Knights of the Royal Victorian Order and the Knights Grand Cross of the Royal Victorian Order. At the age of 32, he passed away on April 23, 1922 during a hip surgery needed as a result of his bleeding disorder.

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Prince Maurice of Battenberg

Prince Maurice, the youngest son of Beatrice and Henry, and Prince Leopold’s brother, was born on October 3, 1891. Educated at Lockers Park Prep School, Maurice went on to attend the well-known Wellington College. Like his brother, Maurice volunteered in the King’s Royal Rifle Corps. As a Knight Commander of the Royal Victorian Order and as a Lieutenant in the rifle corps, Maurice served bravely in World War I. He was mortally wounded by shrapnel at the First Battle of Ypres in 1914 and died on the battlefield.

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Prince Friedrich of Hess

Prince Friedrick was born to Princess Alice, the daughter of Queen Victoria, on October 7, 1870. The grandson of the queen, Friedrich or Frittie as the family often called him, was an active, cheerful child. He was diagnosed with hemophilia in February of 1873 after a cut on his ear bled for three days. Three months later while playing with his younger brother, Frittie climbed onto a chair in his mother’s bedroom to get a better view from a window. He fell through the window after accidentally tipping the chair. Though he survived the twenty foot drop, he died hours later from a brain hemorrhage. His mother, Princess Alice never recovered from her loss.

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Prince Waldemar of Prussia

Irene, the daughter of Princess Alice, gave birth to Prince Waldemar of Prussia on March 20, 1889. The family was devastated that the “Royal Disease” had shown up in the ruling Prussian family. Although the condition caused Irene much anxiety with regards to her son’s health, unlike many of his relatives, Waldemar lived into his fifties. He married Princess Calixta of Lippe on August 14, 1919. Though they had a happy marriage, they decided against having children.

Waldemar lived to see a time when treatment for hemophilia saw some improvement. Doctors discovered that an infusion of blood from a healthy patient could help stop the bleeding in people with hemophilia. As such, Waldemar received infusions to control his bleeding episodes. During World War II, as he fled the Russian advance with his wife, the couple found themselves in Tutzing, Bavaria. Not long after arriving in the city, the American Army took control of the area and sent all the available medical resources to treat victims in the concentration camp. Without access to blood transfusions, Waldemar passed away on May 2, 1945 in Bavaria.

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Prince Heinrich of Prussia

Waldemar’s younger brother, Prince Heinrich was born on January 9, 1900. The entire family was devastated, especially his mother, Irene, when Heinrich died after falling and bumping his head. He lived to be just four years old, passing away February 26, 1904.

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Russia

Princess Alice had another daughter, Alexandra of Hesse who married Tsar Nicholas the II of Russia. They would go on to have five children, one of them considered to be one of the most famous of all the royals with hemophilia, Tsarevich Nikolaevich Alexei, the great grandson of Queen Victoria.

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Tsarevich Nikolaevich Alexei

It was an extremely joyous occasion for the Romanov family when Alexei was born on August 12, 1904. Being the youngest of the family, and the only son, Alexei was in line to be the next Tsar and leader of the Russian Empire. As the only male heir to the throne, the family was devastated when it was discovered that Alexei had hemophilia.

From a young age, Alexei was very energetic, though he was ordered not to play too roughly and was prohibited from such activities as riding a bicycle. As a child, Alexei was prone to mischief and he was known to play pranks on guests of the house. His parents had to appoint two sailors from the Imperial Navy to watch over Alexei and keep him out of trouble, which they were not always able to do.

When he suffered bleeding episodes, the entire house suffered with him. He was prone to weeks in bed and often had to wear a heavy iron brace. Alexandra and Nicholas devoted much of their time and energy to seeing that Alexei was taken care of. They came to rely on the services of Rasputin, a monk who was able to help Alexei through his painful bleeding episodes. Nobody knows exactly how Rasputin was able to “heal” the young Tsarevich. It is speculated that he used some combination of hypnosis, herbs, or as some believe “supernatural healing powers” to aid Alexei in times of need.

Alexei’s hemophilia often took his parents’ attention away from governing. Their reliance and close connections with Rasputin spurred much gossip and discontent. The country was already plagued with political and social unrest. A series of bloody revolutions took place that would ultimately put the communist Bolsheviks in power. Arrested in the Russian Revolution of 1917, Alexei and his family were forced to live for some time as captives. Tragically, in July of 1918, the family was systematically executed by the Bolsheviks to ensure that a counter-revolution could not rally around the former rulers of Russia. Alexei and his family were eventually canonized as “passion bearers” in the Russian Orthodox Church Abroad.

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Spain

Hemophilia would find its way into the ruling royal Spanish family by Victoria Eugenie, who was daughter of Princess Beatrice and granddaughter of Queen Victoria. Victoria Eugenie would become Queen of Spain when she married King Alfonso. Of their four sons, two of them (including the heir to the throne) would be diagnosed with hemophilia. The King and Queen of Spain were reported to have an unhappy marriage. The King took many mistresses and reportedly never forgave the Queen for bringing the bleeding disorder into the royal bloodline.

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Alfonso, Prince of Asturias

Queen Victoria’s great grandson, Alfonso was born on May 10, 1907 and was the heir to the throne of Spain. When it was found he had hemophilia, he (and later his brother, Infante Gonzalo) wore specially tailored jackets to try to help prevent bleeding episodes. Political upheaval left the monarchy in Spain largely defunct as the country moved to become a republic. Alfonso renounced his rights to the throne and married a commoner. He would later divorce, remarry, divorce again, and then father a child out of wedlock.

In 1938 at the age of 31, while driving in Miami, Florida, Alfonso crashed into a telephone booth. Though his injuries were minor at the time, he suffered fatal internal bleeding and later passed away. He was initially buried in Miami, but was later moved to The Pantheon of the Princes in El Escorial, Spain.

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Infante Gonzalo of Spain

Born October 24, 1914, another great grandson of Queen Victoria, Infante Gonzalo was the youngest of King Alfonso and Queen Eugenie’s children. When he was baptized, the final name in his title “Mauricio” was in honor of Prince Maurice, his uncle with hemophilia that was killed in World War I. Gonzalo was an avid sportsman and also held Private rank in the Spanish Army, though he did suffer ill health because of his condition. While spending summer holiday with family in Austria, Gonzalo was driving with his sister. In an attempt to avoid hitting a cyclist, the siblings crashed into a wall. Similar to his brother who would perish in a car accident four years later, Gonzalo suffered no obvious injury immediately following the accident. Hours later, it was discovered that Gonzalo was hemorrhaging into his abdomen. He died a few days later.

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One day, Olga, Tsarevich Alexei’s sister, found the ten-year old prince gazing up at the sky. When she asked what he was doing he replied, “I like to think and wonder…I enjoy the sun and the beauty of summer as long as I can. Who knows whether one of these days I shall be prevented from doing it.” The princes afflicted with “The Royal Disease” faced struggles largely unknown to our community today.

Though the ruling monarchies of Europe often attempted at every level to minimize the appearance of hemophilia in their families to the public; privately, great measures were taken to learn about and treat the disorder. They commissioned the finest physicians of the time to attend to their children. Increased attention from physicians brought interest and new literature regarding the condition. The late 1800s saw a huge increase in the amount of publications focused on hemophilia, shedding light and paving the way for future physicians to advance treatment. Though their struggles were great, the status of the princes with hemophilia helped advance research and bring attention to “The Royal Disease.”

It is speculated that treatment for hemophilia would not have advanced as quickly as it did were it not for the royal princes who suffered from the condition. Their stories are compelling and prompt us as young Alexei to think and wonder…

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At BioMatrix, our clinical and support staff are highly experienced in bleeding disorders.

We offer a team of uniquely qualified and compassionate care coordinators who understand how to successfully manage a bleeding disorder.

Our coordinators work closely with patients, families, Hemophilia Treatment Centers and other support organizations to provide around-the-clock, individualized services.

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Home Infusion Steps and Helpful Tips

Even for those very experienced in infusing, there are times when a vein is missed or decides to be more challenging. Here are steps and helpful suggestions for successful infusion.

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DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

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Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

My Chronic Life is Not a Lifeless Life!

By Jacey Gonzalez

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Chronic... Lifelong… Everlasting…

These are words that have been used to describe my bleeding disorder especially when explaining what I couldn’t do, where I couldn’t go, or what I was limited to. However, looking back on my life, I have realized through the highs and lows of living with a bleeding disorder, I have been given a chronic life, not a lifeless life.

Growing up, my mother and I planned everything around what was going on with my health. Where I would go to school, what sports I would play, where and with whom I could travel. It seemed we always had everything planned to a tee. My life revolved around my health – first leukemia, with which I was diagnosed at age 3, then on my platelet disorder, and then around my von Willebrand Disease. I was hyper-aware that while I was an average child, medically, I was different. 

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I was always inspired to do the absolute most with my life and to curse anyone who thought otherwise. I was strong, I was resilient, but by the ripe age of 16, I was completely done caring about my medical needs. This was the only time I lashed out against my health issues.

Call it teen angst, call it independence – no matter what you call it, I wanted nothing to do with managing my bleeding disorder. I grew up as the “cancer kid” and I wanted nothing more than to spite that moniker for the rest of my life. It defined me, almost too much. Kids are mean, and they notice when you’re different. There is something almost cruel about the innocence and ignorance of children who don’t have to worry about their medical limitations. The impact of this didn’t quite dawn on me until my junior year of high school.

Junior year – my first chance to go to prom, the year I took my SATs, the year I fell in love for the first time. We lost our insurance that year and got stuck with the worst state-monitored HMO plan we could have possibly imagined. So much was going on all at once and with all that change, this was the year I decided I wanted to be normal. I didn’t even want to worry or think about my bleeding disorder.

Isn’t that what every person with a chronic illness wants? To be normal, to not question if basic things are safe, to go with the flow and not inconvenience the people around you. I was a varsity athlete, I had the best friends, and I thought to myself, “If I believe I am normal enough, everyone else will too.”

I made mistakes. I took my (very fragile) health into my own hands and decided I was going to live an unencumbered life and pretend my bleeding disorder didn’t exist. Come what may! To save you the trouble of rehashing all of my mistakes, I’ll leave you with my final thought after that turbulent year.

I’m not normal, and I was never meant to be.

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People with chronic illnesses aren’t normal. We aren’t meant to be. We are a tenacious bunch who for whatever genetic reason, have an ailment that impacts our lives. We are stronger than most, we persevere more than anyone should ever have to, and we are brave.

We put a smile on our face and have Emmy-worthy acting skills making everyone believe we are okay. Even if we may not always feel like it, we make sure everyone knows we are just fine. Every time I have to take a butterfly needle and find a vein, I am filled with melancholy. But I do it – we have to. We weren’t given a choice in the matter.

Having a chronic illness is not only physically exhausting but mentally as well. It’s almost as if my brain wants to give up, but my body won’t let it. Then as soon as my body fails me, my mind compensates. It’s a constant teeter-totter of what will cause you duress on any given day – my brain or my body. Sometimes it takes you to the deepest darkest places, and there’s almost no semblance of light to cling to.

But where we don’t have light, we have hope. We are so fortunate to live in an age where effective medications are available for us. Where we have competent doctors helping us manage our lives. Where our diagnosis doesn’t mean impending death. We can call our friends we met at camp or through conferences and ask for help during our difficult times. We are only a Facebook message away from contacting someone who is going through the same thing. We are the lucky ones. Not everyone in other chronic illness communities is as lucky. We are fortunate to be part of a community where we are loved, understood, accepted, and supported.

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Chronic illnesses aren’t easy. I’ve changed some of my life goals to be able to work with what I am physically able to do. I have come to terms with the way my bleeding disorder has shaped my life. I have also come to terms that I am not the same carefree kid I once was, but those losses have been replaced with a responsibility that I am part of a changing medical landscape. Hoping that it will one day help other people, I am contributing to advocacy and research. My efforts are making a change not only in my small rare disease community but in the greater population of rare diseases.

We are so fortunate to have the opportunity to be directly involved in the issues that impact us regularly. Whether the issues are regarding new medications, new legislation, or new insurance regulations, we have the power to better our own life as well as the lives of others in our community.

We, as a community, are not normal. We were never meant to be. Normalcy is a construct with expectations that are inherently out of reach. Our version of normal though – our chronic life – is so full of color and hope and perseverance, it’s better than any version of “normal” ever described. We are history, we are the future, and we are living amazing lives full of challenges and triumphs and growth of character. Even with a disorder where something is missing, we are whole.

I am a Star Wars nerd, an avid reader, and a proud mom to many succulent plants. I’m a sister, a daughter, an advocate.

I am not my disorder. I am not normal. My chronic life is not lifeless.

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Our entire team is committed to maintaining the health and wellbeing of those we are privileged to serve.

For updated information regarding our response to developments related to COVID-19, a letter from our CEO, and early refill requests, please click here.

Stay healthy, and be well.

We are with you and will get through this together.

---

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

We value your privacy. Review our Privacy Policy here.