HFA Symposium: Reunited and It Feels So Good!

By Felix Garcia

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The line at the registration table, the name tags with funny labels such as Disruptive, Bro-ster, and This Side Up (pointing the wrong way, of course)—and new this year, color-coded lanyards to signify contact comfort level given COVID-19, are all familiar parts of entering the HFA Symposium experience.

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I missed attending the Symposium the last couple of years, though I didn’t realize how much until I was there. I even wore my name tag every day. Yes, that was an accomplishment for me! Like someone who has been deprived of basic needs and then values them that much more once they’re available, I appreciated being at the Symposium. There was so much to take in this year!

In San Antonio, Texas, April 20-23rd, HFA took precautions to help protect those in attendance from COVID-19. A mask mandate was in place, and as mentioned, our lanyards were color-coded, indicating our contact comfort level. Red meant “Keep your distance, please!” Orange, “Let’s talk but no hug.” And green signified, “Get over here—I missed you!” Okay, maybe green didn’t mean that exactly, but that’s what it felt like! As expected with our caring and compassionate community, everyone was respectful of each other’s preferences. I wore green—what can I say? I’m a hugger, missed my bleeding disorder family, and threw caution to the wind. Also, attendees could exchange their lanyard for another color if they opted to change comfort levels during the event.

Throughout the Symposium, attendees wore masks except while eating, so there was a lot of looking at someone, almost sure you recognized their eyes, but needing a peek of their face to be positive. It was a little funny to reunite with friends after flashing our faces.

If the Symposium was only about reuniting community members, the event was entirely successful. Lucky for us, they didn’t stop there. The variety of sessions was a hit, and the diversity of subjects, topics of inclusion, and the realization of all who are included in our community was impressive.

As an adult with severe hemophilia, I looked for particular topics like joint health and aging with hemophilia; as an adult who grew up in the 70s and 80s, I’m interested in other areas such as coping with co-morbidities and the remembrance ceremony. They were both available. Thank you, HFA, for remembering that we, the 3H generation—hemophilia, hepatitis, and HIV—still exists, and we needed a session of our own to attend with our spouses, partners, and loved ones.

Looking through the agenda schedule, most could find something of interest. Parent programs? Check. Children’s programs? Check. VWD programs? Check. Bleeding disorders and the LGBTQIA+ community? Check. How about sessions for rare bleeding disorders? Check again!

No matter your perspective or how a bleeding disorder impacts your life, HFA planned a session for you.

As others had mentioned, this year’s exhibit hall felt different. It had nothing to do with the booth setups or the give-away items. It took me two days of the designated hours to get through the hall because it was a time to reunite and catch up on the last few years. It was a wonderful opportunity to visit the booths, talk with the representatives, and learn about new products and services that have been introduced over the past couple of years. Though I’ve attended Zoom sessions with many of the people I saw at HFA, the exhibit hall provided a chance to catch up face-to-face. It was a breath of fresh air, even through a mask! 

The HFA Annual Symposium has always represented a family reunion for me. Seeing brothers and sisters from all over the country and having the chance to share our family and life issues is a beautiful thing. Our bleeding disorders family is unlike any other. Blood family is cherished, and our bleeding disorders family holds a special place in our hearts and lives. We were finally reunited, and it felt so good!

Bravo HFA, you did us proud!

Hemophilia Federation of America
2023 Symposium
April 13-16 | Orlando, Florida

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And the Men Went Fishing... (Well, Sort Of)

By Shelby Smoak, Ph.D.

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The folly that follows hemophilia reigned again for a Men’s Fishing Retreat in Rehoboth Beach, Delaware, May 6-8th. Structured around a fishing experience, a veritable Nor-Easter took up camp offshore Friday evening and came ashore Saturday, whipping up waves into 12-foot froths of anger, spewing sheets of rain sideways on the shores and streets of the tiny beach town.

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I was there. I saw the perfect storm brewing off the coast. I knew no vessel was going out to brave this storm, and if it was, I wasn’t going. Nor should any of my blood brothers. And when they arrived and we told participants the fishing boat was canceled, no one questioned the wisdom of that decision.

Yet, more miraculous than the wrath of nature outside, our event space was the spirit of the blood brothers—all adult men with hemophilia A or B. In a group familiar with upset plans, participants redirected the lost fishing opportunity into social hangs, poker tournaments, photography lessons, and, of course, numerous rap sessions sharing our various experiences with hemophilia.

Hosted by Country Boy Fishing and sponsored by Medexus, Octapharma, and BioMatrix—men along a cut of the Eastern Seaboard gathered to be together and bond. Fishing was the lure; the people were the real catch. In undistracted conversations, unfiltered honesty emerged, and a frequent refrain throughout the weekend was the lack of such opportunities for men with hemophilia to connect directly.

In addition to the more free-form rap session, structured programming provided more opportunities to engage in conversation. Brandon Young, a person with hemophilia, brought his unique brand of engagement in a discussion of mentorship and the support of “older persons with hemophilia” (a term this “older” person with hemophilia let slide). Octapharma introduced Dr. Claudio Sandoval who spoke on the importance of adherence to treatment therapies, which led to a myriad of discussions on bleeding and the promises of gene therapy.

Medexus brought in community member and fashion designer Christian Harris who coached us on how to buy clothes that actually fit. (Women may be surprised to learn just how interested we were in picking out appropriately fitting pants and shirts.)

My role included leading sessions on using photography as therapy, directing games, and sharing a final night singing session with fellow BioMatrix member and self-styled crooner, Terry Rice.

In truth, there was a Gilligan’s Island feel to the event in the camaraderie and mutual friendships that developed. Indeed, we sat back in with our own tale of a fateful trip whose outcome was far more positive than a group of sea goers stranded on a deserted island. These blood brothers—my friends—formed lasting bonds and left empowered, proof that even a perfect storm cannot dampen our spirits!

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Continuity of Care Support While Going Through a Permanent Change of Station (PCS)

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Going through a Permanent Change of Station (PCS) is a big change, especially for military families caring for a child with a bleeding disorder.

Picking up and moving means building a new support network in an unfamiliar area while re-establishing new primary care providers/specialists, new schools, and new friends. It also means prolonged separation from a parent(s), leaving childcare to the remaining care-taker while being far from extended family.

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Denise is a mother of four. Two of her children have hemophilia, and her husband is in the Army. She said in an interview with BioMatrix:

“We’ve moved a lot. Officially, we have PCS’d I believe 7 times, but we have moved for one reason or another about 14 times. Moving and re-establishing care is always an issue. First, we have to get the move approved by the Exceptional Family Member Program (EFMP). Once we move, we have to see a primary care physician before we receive a referral for the hematologist.”

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Continuity of Care

Continuity of Care (COC) is a concept centered on the quality of care patients receive over time and a process where the patient’s care team is cooperatively working together for their good. Unfortunately, some populations are predisposed to issues with continuity—including those serving in our armed forces.

Prolonged separation from family members and frequent moving can negatively impact COC for military families. One analysis found that 44% of military families caring for children with special healthcare needs did not receive assistance coordinating care across providers.¹

Though military families face COC challenges, specialty pharmacies are uniquely positioned to help them preserve their quality of care and health outcomes. They can help coordinate care across multiple healthcare access points for those with chronic conditions by:

• Leveraging detailed clinical knowledge with individualized patient information to help providers fine tune treatment plans

• Helping patients understand their coverage, coordinating health benefits, securing prompt authorization for prescribed therapy, and providing access to resources reducing barriers to care

• Coordinating services between patient, provider, payer, and other community-based resources to overcome challenges, maintain continuity, and promote safe, effective care

Beyond filling a monthly prescription, the right specialty pharmacy can become an advocate and partner in the ongoing management of chronic health conditions.

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As a nationwide, TRICARE-approved specialty pharmacy, BioMatrix is proud to serve the women and men of our military.

Providing seamless continuity of care for our TRICARE beneficiaries is both an honor and a privilege. We provide oral, injectable, and biologic medications used to treat complex health conditions and help implement complex treatment plans. By coordinating services between patient, provider, payer, and other community-based resources, we help bridge gaps, preserve continuity, and improve outcomes. 

We empower patients to better manage their condition and live each day to its fullest. Whether you’re a patient or provider, we want to be an advocate and supportive resource for you.

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Permanent Change of Station (PCS) Resource Guide

Our Permanent Change of Station Resource Guide was designed specifically for military families caring for a child with a bleeding disorder. This resource includes:

• Articles and guides to help you prepare for your PCS and information regarding recent changes to TRICARE

• National organizations serving the bleeding disorders community

• Local resources by TRICARE division including Hemophilia Treatment Centers, local bleeding disorders chapters, and camp programs for children with a bleeding disorder

Upon receiving your request, we'll email a copy of our PCS Resource Guide and include contact information for your local Regional Care Coordinator.

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References

1. “Experience of Children with Special Health Care Needs in Tricare.” https://www.tricare.mil/Survey/Hcsurvey/childIssueBriefJan27_rev.pdf, Health Care Survey of DoD Beneficiaries. Nd.

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Blood Draw Success!

By David Tignor and Rob Carter, RN

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I can’t imagine there are many people who actually enjoy having their blood drawn; however, to maintain good health, routine blood draws are often necessary. This article reviews ways to help ensure blood draws are as easy and trouble free as possible.

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As a person with severe hemophilia A, routine labs and blood draws are a part of my care routine. On a few occasions, I have experienced bleeds in the antecubital vein (the area in the bend of the arm) as a result of having the venipuncture. These bleeds were most likely due to one or more factors: the gauge of the blood draw needle, the unavoidable movement of the needle in the vein when collection tubes are placed and removed, how the needle is withdrawn from the vein, or even from the post-draw bending of the elbow, rather than keeping it straight, to place pressure after the needle is removed. If you live with a bleeding disorder you may have experienced similar issues. Luckily there are steps you can take to minimize negative effects from an infusion or blood draw.

If you have a bleeding disorder, chances are your veins are accessed on a more frequent basis than most individuals’. As such, it’s important to keep your veins happy and healthy. One great way to start well before an infusion is needed is through diet and exercise! Regular exercise will help your veins grow larger and stronger.

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Additionally, following a healthy diet will ensure your veins recover quickly from frequent pokes and prods. Dietary suggestions include food rich in bioflavonoids (natural antioxidant compounds typically found in fruit), vitamin C, antioxidants, and fiber. This will help the elasticity and strength of the vein walls and valves. A healthy diet, plenty of exercise, and staying properly hydrated will have a positive impact on your veins and overall health.

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We all know that our annual HTC visit will typically require labs to be drawn. Many hospitals and clinics will have a phlebotomist available to administer the blood draw. A phlebotomist is an individual who is trained and certified to draw blood. Typically, phlebotomists will use vacuum-sealed collection tubes in conjunction with an adapter/holder and a hypodermic needle. The size of a needle is determined by gauge numbers, which refer to the diameter, technically known as the “bore” of the needle. A larger gauge number indicates a smaller needle diameter or bore. For example, the bore of a 23-gauge needle is smaller than a 16-gauge needle (often used for blood donations). For adults, the most common blood draw needle size used to draw blood is a 21-gauge.

There can be a higher risk for those living with a bleeding disorder to have bruising, hematomas, or even a bleed at the venipuncture site when blood draw systems use a larger needle.

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An alternative for preventing trauma to your vein is to use a butterfly needle. I have found that requesting a smaller gauge butterfly needle for blood draws has made a huge difference for me. A 23-gauge is the size typically used on children. Anything smaller, the needle would need to be in the vein too long and can cause hemolysis, which is the breaking down of red blood cells causing the release of hemoglobin into the surrounding fluid and may result in a ruined blood sample. 

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Your phlebotomist can be asked to use a 23-gauge butterfly needle and most of the time they will comply without any issues. However, sometimes they have to follow a certain protocol when drawing blood and are allowed to use the smaller 23-gauge butterfly needles for children, or to control stress placed on small or fragile or rolling veins. If you are an adult and would prefer a smaller needle for your blood draw, talk to your hematologist or doctor and ask them to write, “Please use 23-gauge butterfly needle” on your blood draw orders. This will let the phlebotomist know there is a valid reason an adult with seemingly typical veins requires a 23-gauge butterfly needle for the venipuncture.

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Especially for children, a numbing cream can be applied to the venipuncture site to help alleviate the pain of the needle stick. This will require time for the cream to work. Also, an excessively tight tourniquet is not needed and may cause bruising on tender skin. Placing the tourniquet over the sleeve instead of on bare skin can help with this. 

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It is important to educate your phlebotomist about your bleeding disorder as it relates to the draw and advocate for your specific needs. In my case, I have pretty good veins and some phlebotomists do not understand why I am requesting a 23-gauge needle. I found it helps to have a quick conversation before the blood draw. Educating them about your condition and the steps that can be taken to minimize any issues is a great way to ensure a positive outcome. If you are not comfortable with their level of experience, you have the right to ask for another phlebotomist.

Phlebotomists have a demanding job and are sometimes rushed to get patients in and out of the lab. Sometimes being in a hurry can result in human error when extracting the needle, such as applying pressure while the needle is still in your arm instead of applying pressure after the needle is completely removed. This can cause unnecessary trauma in the vein. Remind the phlebotomist to remove the needle completely. Once gauze and a bandage are placed over the injection site, place gentle pressure for at least 5 minutes while keeping your arm straight. Bending your arm can cause the blood to pool resulting in a bruise. If certain adhesives cause skin irritation, be sure to remove the tape within 20 minutes. A Coban wrap instead of tape may also be requested.

Healthy veins are important for everyone, but for those living with a bleeding disorder, taking additional steps is key to preserving the access sites we depend on. By eating healthy, staying well hydrated, exercising, and working closely with your physician and the phlebotomist conducting blood draws, you can greatly improve your experience when it comes time to do labs or receive an infusion.

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Tips for a Successful Blood Draw

Hydrate – Most important for a successful blood draw is to be hydrated. Drink plenty of water before your appointment to help dilate the veins. Avoid nicotine (cigarettes, vapes, chewing tobacco) and caffeine (sodas, coffee, energy drinks). These will constrict the veins making the draw more difficult.

Warm up – Being warm increases the blood flow and makes the veins easier to find. Take a warm shower before your appointment and keep yourself warm in cold temperatures. Do a few jumping jacks or rotate your arms around to get blood flowing. Hold a warm compress over the injection site for 15 minutes.

Use gravity – Let your arm hang down to increase blood flow. Make a fist or squeeze a stress ball. No need to pump your hand since doing so does not increase blood flow, especially once the tourniquet is on.

Relax and breathe normally - Being tense can lead veins to constrict. Don’t watch the venipuncture if it bothers you or makes you feel dizzy.

Sit still – Try to avoid making it more challenging! Hold a small child in your lap, and use distraction.

Speak up – If you’re prone to feeling dizzy when having your blood drawn, let your nurse or phlebotomist know before starting.

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Camp… Deeper Than The Surface

By Felix L. Garcia

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Remember when the most phenomenal week of the year began when our feet hit the ground at bleeding disorders camp? For me, the joy of that week seems like yesterday, and at the same time, as if it were a lifetime ago. Those feelings get lost as we grow older. A few of us go back as counselors, but for most—school, jobs, relationships, and other grown-up obligations take their place. Those years at camp are precious.

When I was young, there were no camps near where we lived. When I was about 11 years old, my parents contacted the closest HTC in our state and arranged for me to attend. I was blown away! It was the most liberating week of my young life! Every cabin was full of boys just like me. I didn’t have to explain my bruises or why I was limping by the end of the day. After all, everyone else was limping too. There was comfort in knowing we were all going through the same challenges in our lives. We were happy to be together. I can’t think of a fonder memory than that week, and from the start, I looked forward to it all year long.

In my life back home, I was sort of an outcast. Kids looked at me as if I were strange. I was sometimes called a “faker” because I’d arrive at school in the morning just fine but would be in pain and limping by the end of the day. Keep in mind this was before the days of prophylaxis—I infused only when it was needed to treat a bleed. I can only imagine that home life was much the same for my hemophilia brothers. 

During my last 2 years at camp, I remember sitting with my cabin mates talking about the HIV/AIDS virus that was running rampant in our community. At that time, we all saw it as a death sentence. Treatment wasn’t what it is today. A couple of my fellow campers knew they had already contracted the virus, while many of us had also, but didn’t know it yet. We talked about how we were all eventually going to get it to help our diagnosed blood brothers feel better. Crazy how such a sad thought might bring comfort to someone. At the time, my parents knew I had HIV but kept it from me for a while. Camp was a safe place though—we talk about everything with each other.

As I look back through adult eyes, the camp experience was different then—in some ways better, but in others, it was barbaric! To me, the week was more about letting these poor kids have the time of their lives for a few days rather than trying to teach them anything. I can’t really say I remember learning much about life skills or how to prepare for the future. My biggest takeaway was learning how to self-infuse though, and that was a huge benefit. With a bleeding disorder, our life span was already jeopardized. Once HIV/AIDS entered the picture, we honestly didn’t have much of a future to look forward to. With no parents hovering over us in this newfound freedom, we weren’t afraid of anything—at least I wasn’t. That mentality may have led to my no longer being invited to camp.

During my last camp year as a 14-year-old, we swam and canoed along a small river where the campground was located. Just downstream was a Girl Scout camp. My cabin mates and I decided to sneak over to visit the girls’ camp. Our (untrained) counselors thought it was a great idea and did nothing to stop us—they cheered us on if anything. And so, with another boy and me deemed the ringleaders, we snuck off in the hush of the dark night in canoes, quietly and covertly passing the security guard… and we got away with it.

I got a kiss on the cheek from a Girl Scout that night. That would have been a sweet, sentimental camp story if it ended there, but of course, it didn’t. The next night, our last night, we organized another expedition to the girl’s camp. Having heard of our previous adventure, other campers joined us, and the group was much larger this time. We couldn’t all travel by canoe, so we had to make the trek on foot. This time, however, the whispers, giggles, and commotion were much too noisy, and we caught the attention of the security guard. Busted! Our adventure failed miserably!

The next morning, eager to avoid my parents learning about the trouble I had gotten into, I waited at the pick-up spot with my luggage. As soon as they drove up, I threw my bags in the car and said, “Let’s go!” We left without my parents ever hearing about what happened the previous night. During a post-camp meeting, it was decided the ringleaders (the other boy and I) were no longer to be invited back to camp. In more modern days, camp is an entirely different ball game. Rather than letting kids run around wild, the focus is on developing boys and girls to be productive, responsible adults who can care for themselves and manage their health condition. In addition to all the fun activities, a lot of rules and oversight to keep everyone safe and out of trouble have been implemented.

I had no idea how much that innocent kiss on the cheek would cost me. It was years before I realized the impact not attending camp would have on me. As a teenage boy with HIV and a debilitating chronic illness in the early 90s, it caused me to lose my support system—I needed my blood brothers. The years that followed were lonely—not a single fellow hemophiliac around. My circle got smaller and smaller as I grew distant from most people. I was a loner who tried to cover my pain with jokes. Those were dark days as the cloud of HIV loomed overhead… I lashed out, and my behavior spiraled to the point I became self-destructive.

It took years to eventually find my way out of that place. I had to learn to cope with the fear of death and the guilt of surviving. Since then, I’ve volunteered as a counselor for years (even at my old camp) and have held various positions within camp committees, always advocating for that one kid who needs more attention or direction. 

Once a boy in my cabin acted up and kicked out a window. I fought hard to keep him from being sent home. It turned out his medications had gotten mixed up, and he was off balance. His actions were not his fault. He was allowed to stay and was a perfect camper the rest of the week. I do everything I can to help the camp experience be the very best it can be for all children, not just the easy ones.

My experiences have taught me just how important bleeding disorders camp is for our youth. COVID-19 and its variants have, of course, done a number on our whole world, but on a smaller, more personal level, it’s been horrible for the young people in our bleeding disorders community. It may seem like just a week of fun, but it has taken away the experience of being with others who walk in similar shoes where no explanations are needed. We won’t know the real impact the isolation has on these young lives for years, if ever.

Many organizations understand the importance of camps and have done their best to provide get-togethers in the form of virtual meetings. We all know this isn’t at all the same as being on the campground, but if that’s all that’s available, then let’s get the kids to participate! I implore camp staff to keep volunteering—even if it’s a corny Zoom session, do it! You may not think so, but it does make a difference!

Make it a goal to reach out to former campers and their parents about attending. If you know of a child who is now of camp age, contact their parents and invite them to attend. Parents, we never know what is truly going on in the hearts and minds of our children. We only get to see the portion they choose to share with us. With fellow campers and even counselors, they may, and often do, share another side of themselves. Encourage your child to attend even if they don’t seem interested.

I challenge each of you to share my story and to make the effort to participate in camp. Let’s make sure we are here for our youth especially now when they need us most! 

#KeepCampGoing

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Summer Camps Are a Wonderful Thing!

By Sarah Henderson

Arkansas: Camp Nopokamee

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Summer camps provide safe opportunities for children as they learn how to cope with life away from home, problem-solve, engage in critical thinking, and feel like they belong.

Kentucky: Center for Courageous Kids Camp

When a child has a medical challenge, we are often reluctant to send them to camp. Scary possibilities creep into the mind, and fear begins to take root. Let’s explore what happens when our children with a bleeding disorder attend camp.

The bleeding disorders community has many camps designed specifically for children with hemophilia, VWD, and other bleeding disorders. The skills, friends, and experiences your child will gain at camp are priceless.

As parents of children with a bleeding disorder, we have spent the first many years of their life protecting them from the world. The thought of sending your child off for the first time without you can be gut-wrenching. Just knowing you won’t be able to see and assess them and monitor bleeding prevention and treatment for a week is a hard pill to swallow. Adding to the stress is knowing these kids are going to participate in a lot of unfamiliar activities that we may have not considered acceptable due to the risk involved. A very important thing to remember is that the people you would call if a bleeding episode happened are the very people who will be diligently watching your children at camp! 

The medical staff stands by, interacting and teaching your child how to participate safely! Campers may find a new sport or hobby they never knew they would love. While at camp they will also spend time learning about their bleeding disorder. As parents, we sometimes forget our children will need to fully understand and be prepared to handle their disorder on their own. At camp, they can take responsibility and learn to become accountable for their bleeding disorder care. Kids need to learn and practice being independent so they can be ready to manage their own health as they grow to adulthood.

Many adults have fond memories of summer camp. Our children with bleeding disorders shouldn’t be excluded from these childhood adventures and friendships. At camp, kids find others who have similar life challenges and can make truly valuable, lifelong friendships.

There are many helpful things you can do to prepare your child for attending camp the first time. If your child knows you are feeling apprehensive about sending them, they will likely pick up on it and begin to feel anxiety as well. Talk about the experiences they will have from a positive perspective, and be excited for them! Be available to answer any questions they may have about camp. Ask chapter staff, HTC staff, or other parents for details about the specific camp so you are ready and able to answer your child’s questions. If possible, look at pictures of the camp from previous years as posted on the camp website, in newsletters, or on social media to show your child all the fun activities and the smiling faces of the campers.

A packing list will be provided upon camp registration. When packing, remember – camp is about kids having fun, making friends, and learning about themselves! Camp is NOT about what brand of clothes or shoes they are wearing or who has the best material possessions. Don’t put unnecessary pressure on your child by sending expensive or irreplaceable items. Let them have fun playing and getting dirty by packing old clothes and shoes that can get lost or ruined. Belongings will be stained, torn, shoved in corners or under bunks, packed up with wet clothes, or possibly used in the pranking of another cabin!

When packing, keep in mind not every item will make it back home. If your child is lacking old, worn-out clothes to pack, a trip to a resale shop could save a lot of money in the event their clothes don’t make it home. That’s also a great place to buy a duffel bag or backpack that may be ruined at camp.

There are various places to find camps that are good for our kids with bleeding disorders. First, right here in this newsletter is a list of camps around the country! Other parents are a great resource and are usually happy to share where their kids went to camp and about their experiences. Many adults with bleeding disorders may have fond memories to share about where they attended camp as a youth, or even now as a counselor. Your HTC and local chapter will be able to point you in the direction of local camps as well.

Summer camps provide your child with the opportunity to learn, engage, try new things, and play the same as a child without a bleeding disorder. The programs are specifically geared toward children with a bleeding disorder and are designed and implemented in a way that is safe and enjoyable. Your child will gain knowledge and experience around their specific bleeding disorder, learn independence, gain confidence, make lifelong friends, and enjoy a sense of belonging. Find your local camp, and register today to ensure your child doesn’t miss out on this life-changing experience!

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New Mexico’s Hybrid Camp

By Felix L. Garcia, Camp Counselor

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That’s right – summer camp can be hybrid! In my home state of New Mexico, our bleeding disorders camp committee thought this would be the way to engage as many campers as possible, as safely as possible, given the potential hazards of COVID-19. Hybrid was different, to say the least, and by no means can it be compared to an in-person awesome week at the campground together but given the circumstances, it proved to be a great option. I’m a camp counselor, and this is my take on hybrid camp for children with bleeding disorders.

As an adult with hemophilia in my late 40’s, I went to bleeding disorders camp as a kid and eventually returned to serve as a counselor, program director and even camp director at various camps for kids affected by bleeding disorders. I’m currently a counselor and help create programming for Sangre de Oro Bleeding Disorder Foundation of New Mexico’s Camp Sangre Valiente. Last year, in an attempt to include as many campers as possible, the idea of a hybrid version of camp was encouraged.

Hybrid Camp means a camp that is both virtual via a Zoom platform and in-person. Our camp committee led by Camp Director Alfonso Jaramillo had to first decide what a hybrid camp was going to look like. We opted for an “on-the-road” style camp. This meant taking our camp program to a couple of sites in the state, while still hosting a virtual camp on other days. This was a lot to ask of the chapter staff and volunteers, but of course, the dedicated team decided it was worth the effort to provide the very best programming for our youth.

For ease of scheduling, we decided to have 3 consecutive days of virtual programming, followed by two days of in-person programming. Camp was held June 9-13, 2021. During our virtual programming June 9-11, we made meals from all over the world and included a bit of education on what it’s like to live with hemophilia in that region. Before camp, the registered families were sent the recipes, a grocery list and a gift card to purchase the ingredients so they could cook along… and cook along they did! I was able to represent Italy and led a program called Pizza Dude. My campers made their own pizza and learned a few key tips on how to order a pizza as well as how to order their factor and supply products from their specialty pharmacy.

On another day we made garlic noodles and chicken nuggets as we learned about bleeding disorders in Asia. Campers also made desserts with their other counselors, which was sweet! Virtual camp was attended by around 40 campers and family members who jumped in on the fun. It was a delicious and educational time!

The in-person part of our hybrid camp took place June 12-13. We sponsored travel and overnight accommodations for anyone 2 or more hours away from either of the two camp locations, Ruidoso and Albuquerque. What made the in-person camp experience extra special is that to have as many campers attend as possible, we opened the activities to the entire household. At each location, attendance was limited due to restrictions and precautions, but with more than 50 participants, we were still able to make awesome memories!

The chapter led a special arts & crafts project where we decorated shoes, which were later donated to the Ronald McDonald House in Albuquerque. After hearing from our guest speaker, Christopher Ingram, a professional bowler with severe hemophilia, families had an opportunity to enjoy a few games of bowling at nearby alleys. Christopher is a great role model, and his story was an awesome inspiration to us all.

And then there was the Gaga Pit. Any camper who has played Gaga knows it is a camp highlight! The pit was constructed with corral panels and everyone, especially the dads, had a riot!

This year, we are all hopeful in-person camp returns full force. As an adult, there is nothing like hanging with a bunch of kids to bring out the kid in you. If it turns out that we can’t gather in person, the New Mexico chapter and camp planners are ready to go hybrid again! Good luck to all the campers out there, and remember, even if camp is virtual, you don’t want to miss it!

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Meet the Team: Shelia Biljes

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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 better. In this edition we feature Shelia Biljes.

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”My advice for newly diagnosed families is to build a support team within the hemophilia community. Get involved, learn all you can, and try everything!”

Introducing Shelia Biljes! Shelia, her father, and her son have all been affected by hemophilia factor IX deficiency. These personal connections prompted a journey of service to the bleeding disorders community. Shelia is a tireless advocate, applying her personal experience to help connect, support, educate, and serve people with hemophilia and vWD. Based in the Cleveland area, Shelia primarily works in Ohio and Pennsylvania, but her long time involvement in the community and willingness to serve has led to connections and support for community members across the country. Get to know Shelia!

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What brought you to BioMatrix?

For many years I was employed as a medical claims examiner. After my son was born, I volunteered at my HTC to help design educational programs for families with young children. A few years later, my career path turned toward the specialty pharmacy arena. Twenty-one years ago, I began serving patients with bleeding disorders, happily joining BioMatrix as a Regional Care Coordinator in 2017. It’s been wonderfully fulfilling!

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Tell us about your family and connection to the community.

I was born in Cleveland, Ohio, and have lived in the area my whole life. My father had hemophilia, but I was only vaguely familiar with it growing up. His bleeding disorder was kept quiet because he feared losing his job if he missed work or if attention was brought to the costly treatment.

Becoming a mom was my greatest desire, and it came true with the birth of my daughter, Mika, followed by my son, Jordan, and then my daughter Miya. My dream was for a large family, but three babies riding in a double stroller proved to be enough!

During my second pregnancy, as an obligate carrier and knowing the baby was a boy, my doctor took extra precautions with the delivery. My son was diagnosed at birth with 2% moderate factor IX hemophilia. We were referred to a hematologist and put in contact with our local bleeding disorders chapter. The chapter invited us to their holiday party, which was scheduled for the next weekend. That day, Jordan was just 7 days old. I met people who became my second family, one full of love and support. Our friendships continue to this day, and I am still very active in my local chapter.

Our lives have evolved around the joy of raising our kids, and it’s been an extremely busy journey! We were very involved with school, church, Girl and Boy Scouts, ice skating, baseball games, music lessons, and more!

My daughters graduated high school with honors, Miya as Valedictorian and Mika as Salutatorian. My son completed his Eagle Scout and was Senior Class President. All three graduated college, and by this summer, all three will have master’s degrees. I am so proud of my kids. When I see them using their talents to help in the bleeding disorder community, my heart just swells!

With the kids grown and gone, my husband, Bill, and I are empty nesters currently residing in Columbia Station.

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What is an interesting or unique fact about you?

In addition to hemophilia, my dad passed on to me his love of antique cars. He left my son a 1928 Model A, which we use to cruise around on Sunday afternoons. We also own a 1976 Cobra Mustang, a 1966 Oldsmobile 442 convertible, and a 1971 Kingswood Station wagon. The station wagon inspires many people to approach us and tell stories of trips taken in their family wagons back in the day. The car takes me to the days of being in the back of my dad’s wagon with my siblings small enough to sit side-by-side looking out the back window.

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Who in your life has influenced you the most?

My father, a much-loved Baptist minister, was a huge influence in my life. He suffered quietly through bleeding episodes and illness caused by hepatitis C. In 2019, he was approved for hep C treatment around the same time a cancer diagnosis was received. Sadly, he lived only a few months longer.

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Describe your most difficult challenge.

One of my greatest challenges was learning to infuse my son. Initially, we only infused for injuries, which always seemed to happen at bedtime, weekends, and holidays. My husband worked and went to college, so I found myself making doctor’s office or emergency room trips with all three little ones in tow. When my son turned two, we decided in order to have a more normal life, we needed to learn how to infuse. I was extremely nervous but pushed through the fear for the sake of our sanity and more independence. I encourage new parents to learn to infuse their child just as soon as possible. It makes a huge difference in managing a bleeding disorder.

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What advice do you offer new families?

My advice for newly diagnosed families is to build a support team within the hemophilia community. Get involved, learn all you can, and try everything! I also suggest families speak to their HTC or medical provider about infusing before special occasions where a bleeding episode would be especially inconvenient. Keeping with the old saying, “an ounce of prevention is worth a pound of cure,” I remind them to slow down a minute and make sure their loved one’s prophy dose has been administered before letting the excitement of a moment overshadow the necessity of taking care of business. Looking back at my own experiences, we could have prevented some disappointments and extended healing times had we been more attentive to this.

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What motivates you—what is your passion?

What motivates me is knowing there are still many families in this community to meet and hopefully provide a level of support. My focus for many years has been on uniting community members and watching friendships grow with every event.

As a former part-time wedding photographer, one of my passions is taking pictures. With my kids all grown and gone, my empty nest is now used to entertain my dogs. We have a Rottweiler named Greta Von Biljes, a pit bull, Flynn, and a little beagle, Nora Jean. I often watch my daughter’s dogs, another pit bull, and a labradoodle. All five dogs are subject to portrait sittings!

Sewing is another favorite pastime. Making quilted bedspreads, purses, totes, and table runners takes up some of the time I used to spend running around with my kids. When I make a project, who it is for is decided before I start sewing. As I work, I think about the recipient and fill the quilt with thoughts of love and good wishes. I recently hosted a sewing class for a wonderful group of hemophilia B ladies. It was an event that was so near and dear to my heart! Hopefully, they can use this activity as a future stress reliever.

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What is your proudest achievement?

My proudest achievement was during a BioMatrix sponsored event at the Cleveland Aquarium. The topic was getting over the fear of infusing. Having a serious fear of sharks, I’ve never watched the whole Jaws movie. In fact, I won’t go into an ocean any further than my knees! However, on this occasion I donned scuba gear and swam in the shark tank. To surpass my greatest fear with the hope of encouraging someone to overcome their fear of infusing was worth it!

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How do you feel you are Making a Difference?

By helping families understand overwhelming aspects of insurance and the medical system, I feel I am Making a Difference. I try to help patients navigate common insurance challenges and maintain access to care. It’s a challenge I enjoy and take seriously.

Every month, I host events for families to provide education and support. Themed events are my favorite to plan, and I try to incorporate education unobtrusively. Also, much of my free time is devoted to helping guide young people in our community into college or their chosen career.

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What is the most cherished part of your job?

What I cherish most about being a Care Coordinator is when I can be a light in the darkness for a family with a newly diagnosed child. I remember the women who showed such compassion toward me at my first chapter event, and I try to make myself available for new mothers as I once was.

I have had the joy of watching many boys grow into amazing young men and am so glad to see women finally beginning to be properly diagnosed. As a woman “with hemophilia,” I am excited to have the opportunity to offer education and support to women who have been ignored over the years. Through the patients I serve, I feel I’ve been given the large family I had always wanted.

To contact Shelia Biljes, call 440-813-1626 or email: shelia.biljes@biomatrixsprx.com

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Healing and the Art of Photography

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Iconic 20th century abstract artist Paul Klee captured art’s role best when he said, “Art does not reproduce the visible; rather it makes the invisible, visible.”

And, true to form, since the earliest times, man has used art as a means to express the ineffable: cave paintings portrayed the fears of hunters; Greeks painted the afterlife to put a positive spin on death; and the Renaissance began using art to portray the feelings and emotions of the human mind. Nothing is perhaps more “ineffable” than trying to explain the infinite physical, psychological, and emotional nuances one experiences when living with a chronic illness. But art and especially photography can help.

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Something as simple as viewing or creating art promotes a host of positive effects: reduction of anxiety, mood enhancement, sleep improvement, lowering of blood pressure, lessening of depression. The list is endless. One study using MRI scans even documented how viewing and creating art promoted the ability to repair and “re-channel” pathways in the brain.¹

Perhaps, today, no other artform is as ubiquitous or as easily accessible as photography. Taking a slight shift away from selfies and applying a more critical eye can be more impactful to one’s health than many may think. Therapeutic photography (taking photos for the purpose of healing) does not require a therapist or counselor. It includes taking photos, looking at photos, talking about photos, and even considering photos to shoot next.

Five key features of therapeutic photography lead to its healing potential:

1. Through the photo lens, we view the world more objectively. We become mindful of the things around us and depict an unguarded view of how we are living.
2. Photography is a form of self-expression that can reveal a person’s true state of mind and allow a person to reach a better understanding of themselves.
3. Photography allows us to see and think more deeply. We pay more attention to what we think, feel, hear, and, of course, see. Photography forces us to slow the world down.
4. With photography, everyday experiences and objects can morph into something extraordinary.
5. Photography can unleash the creative spirit. This can be especially helpful for someone with physical or mental impairments, someone who may find other ways to express themselves difficult.²

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These findings and more are included in the BioMatrix education program, Camera On!: Healing and the Art of Photography—one of our top booked programs of 2021. Camera On! is appropriate for both patient and provider audiences and is centered around a hands-on photography activity.

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To learn more about this and other education programs, click below:

If you are interested in booking a program please contact us at education@biomatrixsprx.com.

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References

1. “Special Report on Art and the Brain.” Art & Creativity for Health. Sept. 2017. art4healing.org

2. Gabriel, Michael. “Can Photography Be Used as a Form of Therapy?” Contrastly. Contrastly.com

BioMatrix Highlight: Meet Our Educational Programming Team

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BioMatrix is proud to serve the bleeding disorder community. Our multidisciplinary team works together to help bleeding disorder patients gain and maintain access to prescribed therapy while providing support resources designed to make managing hemophilia or VWD a little easier.

Today we’re highlighting our education division. BioMatrix offers dynamic and interactive educational programming designed to assist patients and caregivers navigate the ups and downs of life with a bleeding disorder. Each program is intended to address key issues faced by bleeding disorders community members, providing a full spectrum of patient and caregiver support. We are pleased to offer these programs free of charge to organizations serving the bleeding disorders community.

Our programming is conducted by our phenomenal team of educators. As Bleeding Disorder Awareness Month continues, get to know our amazing education team!

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Terry Rice | Director of Advocacy and Education

Terry has been a lifelong advocate within the bleeding disorder community. He’s served on the Board of Directors for local and national bleeding disorder advocacy organizations and was one of the original founders of the Hemophilia Federation of America (HFA) in 1994. Throughout the 1990s, Terry spent significant time educating members of Congress in Washington DC regarding legislative initiatives furthering the interests of persons with bleeding disorders. He served a two-year appointment as the community voting member on FDA’s Blood Products Advisory Committee. He has held various management and executive positions within the healthcare industry for 20 years. Terry is a person with a bleeding disorder, and his passion is to empower persons with chronic illness. Terry earned his bachelor’s in chemistry and has studied master’s level economics concentrating in health economics.

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Kelly Gonzalez | Sr. Education Specialist and Regional Care Coordinator

Kelly Lynn Gonzalez is a patient, parent of patients, and spouse in the rare disease community. Having personal experience in bleeding disorders, autoimmune diseases, PIDD, epilepsy, and cancer—Kelly presents education drawn from nearly three decades of personal and professional experiences. Her educational presentation style shares her journey and educates and empowers the audience. She channels her past experience as a teacher and infuses her passion for persons with chronic illness into heartfelt and dynamic programs. Kelly holds an MBA and MA in Education.

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Shelby Smoak | Education Specialist and Advocate   

Shelby Smoak is a tireless advocate for patients with chronic health conditions. In the 90s, his experience living with a bleeding disorder and HIV led him to become actively involved in advocacy. He’s been saturated in the ever-changing dynamics of healthcare ever since. Shelby helps others understand complicated health policy and serves as a voice for patients with rare conditions across the nation. He’s been featured on TV and radio, including NPR. Shelby served on the board for the Hemophilia Association of the Capitol Area and currently serves on the Pfizer B2B board. A former literature professor, Shelby is also a writer and a musician. Awarded a Pen/American grant for writers living with HIV, Smoak holds a PhD in Literature and an MA in English. His book, “Bleeder: A Memoir” received praise from sources as diverse as The Minneapolis Star Tribune, Library Journal, and Glamour and has won several awards, including “Best of the Best” by the American Library Association.

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John Martinez | Regional Care Coordinator

John has over 20 years of experience as an educator and understands the importance of education and advocacy for the bleeding disorders community. John has applied his skills as a teacher and job counselor to enhance outreach in both the English and Spanish speaking communities. Having two adult sons with severe hemophilia and a daughter with mild hemophilia, John has been an active volunteer in his community for over fifteen years. He has coordinated numerous educational programs and worked extensively with his local hemophilia foundation. John has a B.A. in Business Administration and a California Teaching Credential.

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To learn more about BioMatrix educational programming
or to book a program visit:

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

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Meet the Team: Cyndy Coors

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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 better. In this edition we feature Cyndy Coors.

Cyndy Coors has been an active member of the bleeding disorders community for 36 years. She is a unique blend of seasoned professional, talented care coordinator, and gal next door. She’s everyone’s pal and can make you feel like her best friend even when you have just met her. Having raised a son and daughter with hemophilia while lending support to her grandchildren, Cyndy shares experiences with her patients and anyone who can use a hand. She is a valued member of the BioMatrix family, and we are proud to introduce you to her!

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How long have you worked for BioMatrix?

I am proud to be one of the legacy members of the organization. I joined the team in 2003, not long after the company was established. The founding principles resonated with me. Starting with just one patient, their vision was to provide the best possible care and make a difference in the lives of all people with bleeding disorders.

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Where did your career path begin, and what brought you to BioMatrix?

My early career was in the medical field. After completing college, I worked for two general surgeons. Later, I transitioned into the specialty pharmacy field. I was caring for my son who has severe hemophilia A and could now help care for others just like him. Coming to BioMatrix offered a place where I could use my experiences and pay it forward to other families while sharing this journey with them.

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Tell us a bit about your life and your connection to the bleeding disorders community.

Born in Mobile, Alabama (Go Crimson Tide!), raised in Chattanooga, I now call Soddy Daisy, Tennessee home (Go Trojans!). I am a proud mom of two adult children, Derek and Courtney, and have eight wonderful grandchildren. Both of my children and 5 of my grandchildren are affected with hemophilia A.

When my son was born, he suffered a traumatic head bleed and thus began our crash course into the world of bleeding disorders. It was so shocking and frightening as we did not have a family history of hemophilia, but as it turned out, I was a carrier. My mom was a carrier too. Despite ‘signs’ when she was young, it was never investigated. Neither of my siblings are affected.

Derek was an active kid. We became experts at infusions, insurance claims, and managing our day-to-day. We were in a good place; then I found myself going full “momma bear” mode when my daughter began having bleeding issues. I heard a lot of, “Oh, she’s just a carrier, she’ll be okay.” Through experience, I learned not to take “no” for an answer when your gut knows better.

An interesting fact about my life is that I live in a multi-generational home. That’s right! Three generations under the same roof. I joined with my son and his family to purchase a home where we could all live together under one roof. It seems to be a growing trend; there are many benefits to it! Sharing space makes it easier to share your life, help each other, and be present for so many of life’s precious moments.

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How do you feel you are Making a Difference?

There is no greater teacher than life experiences. Clinical experts can tell you all you need to know from their medical perspective, but there is so much more to living well with a chronic condition. I have been there, survived that! It’s been my mission to share my knowledge and support patients so their hemophilia care is a smooth task rolled into their regular week filled with work, school, visits to the zoo, and cheer practice. When you can get to the point where having a bleeding disorder is just part of the routine, that’s when you can live your best life. And that’s what I help families do. It’s what I love!

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Describe your most difficult challenge and how you overcame it.

Although hemophilia today is a rather manageable disorder, it still can present significant challenges. Some of those early days were chock-full of bleeds, injuries, and hospital stays. I wanted to hover over my son and protect him at all costs; however, I didn’t want to be a helicopter mom. So how do I protect and defend him while giving him the space and license to just be a kid? A very compassionate HTC nurse offered some of the best guidance when I needed it most. Her words were, “to overcome the worry” and let my kid live. I listened, and it is the most meaningful advice I continue to share with new families. Kids learn by exploring their world. Make their space kid-friendly, and then let them be. Don’t worry about tomorrow, LIVE for today. If you can redirect your focus from a wide lens, bring in the view, and just concentrate on today, you will be more present. You will lighten the load of worrying while taking the day’s highs and lows more easily. It really works!

Also, we all have that little bit of intuition—that gut feeling that can guide us. Don’t ignore it! If you know something doesn’t seem right, question it! You know yourself and your loved ones the best. Let that wisdom and that little voice inside of you lead you. Be your own best advocate!

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What do you feel is your greatest skill?

I sincerely feel I was put on this earth to be helpful and good to people. Over the years, patients have encountered challenges that I have tried to help them remedy. It doesn’t matter whether it’s related to hemophilia or not. As a Regional Care Coordinator, I have always cared for my patients with an “all in” approach. There is more to caring for someone than just shipping them medication. Family sticks with you through the hard and the happy. Like family, I am here for it all!

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As a Regional Care Coordinator, what is the most cherished part of your job?

I have made friends all over the country who I am so grateful for, and they have entered my life because of living and working in the bleeding disorders community. From clinicians and patients to community members and past and present colleagues, these many friendships have greatly enriched my life. I have learned from many, laughed with most, and have never taken for granted the blessings that have come into my life thanks to these amazing people and the common factor we share. I cherish every single friendship, and my life is better because of each one!

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Outside of work and family, what is your passion?

My passion is baking. My family loves my baking! Time in the kitchen gives me joy and allows me to quiet my mind. Yes, I know my way around an orange-cranberry bundt cake, and I’m not afraid to share it!

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What is your proudest achievement?

I’ve had so many joyful moments and grateful reflections because my heart is open and finds the good in even the most ordinary things. I will say, however, there is one memory that still makes me smile and feel warm. I was being introduced to someone by the mom of one of my patients; she introduced me as a member of her family. Not just their pharmacy care coordinator, but as their family member! I always treat each patient and their family as part of my own. To be introduced as part of theirs, well, there is no greater honor!

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Mental Health Transparency

By Kelly Gonzalez, Education Specialist

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People don’t “fake” depression – they fake being okay.

As an educational speaker in the bleeding disorders community, anyone who has heard me present knows my family has had more than its fair share of health crises and stressful situations. It’s not surprising I have suffered and occasionally still suffer from bouts of situational depression. It took many years of enduring anxiety and internal struggles to discover what I experienced is a normal, often expected, response to high levels of stress.

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After years of fighting to pretend I was okay in situations where no typical person should expect to be okay, I learned that mental health transparency was a myth. Although it’s getting better, there are not very many places or resources where people can openly speak about mental health without fear of being labeled or ignored. This revelation happened after what I refer to as my “Breakdown of 2016.”

That year several traumatic incidents took place and accumulated, causing me to experience what I believe was a breakdown. The series of taxing situations left me feeling shaken and psychologically out of sorts. Fortunately, a very compassionate friend and Hemophilia Treatment Center Nevada provider, Amber Federizo, sat me down and did not allow me to brush things aside. She explained she thought I had Situational Depression or Post Traumatic Stress Disorder (PTSD) and encouraged me to see a mental health professional. She validated to me that the emotional highs and lows, along with the anxiety and frustration, was totally normal for anyone who had been through what I had, and who faced the same issues. She let me know I had NOTHING of which to be ashamed. Amber immediately called in a referral for me to see a professional mental health provider.

Especially with overlapping medical conditions, a health crisis can cause a person to feel much more stressed and intensely worn out. I was suffering from a significant bout of what my doctor confirmed as Situational Depression, also referred to as Adjustment Disorder.

Situational Depression happens when a person feels a more exaggerated emotional response within a few months of a particularly stressful situation. As an example, many people in the bleeding disorder community have related to me they have felt especially down or despondent following the diagnosis of a bleeding disorder in their baby, an especially difficult or traumatic bleeding episode, or of learning of a health deterioration or additional condition.

The symptoms are similar to standard depression but are specifically related to a stressful incident or cause of stress. As I did more research, I realized this was exactly what I was going through.

The following from verywellmind.com provides a list of situational depression symptoms:

• Feelings of low mood and sadness

• Frequent bouts of crying

• Hopelessness

• Poor concentration

• Lack of motivation

• Loss of pleasure

• Withdrawing from normal activities

• Loneliness or social isolation

• Thoughts of suicide

Situational depression affects men and women equally and will last until either what is causing the stress no longer exists, or you’ve learned to adjust to it—typically about 6 months.

Unfortunately it is not something many people know about or discuss openly. They may find themselves struggling to identify their emotional response or might be embarrassed or worried about the stigma attached to their feelings.

In the year 2022, I am surprised people still feel embarrassed when experiencing bouts of depression. People we know, care about, and see daily may be suffering, but they put on a brave face and keep it to themselves. How many of those closest to us have turned to us for guidance, support, or acceptance? Whether it can be contributed to social, cultural, or individual family values, many are convinced that it is not okay to show you’re struggling. We have convinced ourselves that opening up and conversing about negative emotions or depression is taboo and should be kept to ourselves.

There are not many things I can say with total and complete confidence, but I will say this—depression is NOT a dirty word. You are NOT alone. It is okay to not be okay, but it is not okay to stay silent (for long).

To those who think mental health struggles are something to be ashamed of, YOU ARE WRONG. Taking charge of your mental health by speaking up, pursuing healthy outlets, seeking professional help, or even medical intervention is beyond brave—it’s a strong step toward remedying the emotional challenges one may face.

If you are intimidated by the judgment of others for seeking mental health help, please know, undoubtedly, those people are wrong. You are strong enough to confront your mental health challenge and intelligent enough to find reinforcements and get help.

This conversation NEEDS to happen. So, let’s have it—mental health transparency. If you are not okay, speak up; do not feel embarrassed or too unimportant to seek help. Honor yourself for bravely facing the scary. Be pleased with yourself for setting an example of self-love and mental health awareness. Be proud of yourself because you are courageous!

Wishing you much love and light!

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Reference:

Schimelpfening, Nancy, and Dr. Daniel B. Block. “Understanding the Difference between Situational and Major Depression.” Verywell Mind, 22 Mar. 2020, www.verywellmind.com/what-is-situational-depression-1067310.

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About the Author:

Kelly Lynn Gonzalez, BioMatrix

Senior Education Specialist and Regional Care Coordinator

Kelly is a patient, parent of patients and spouse in the rare disease community. Having personal experience with bleeding disorders, autoimmune disease, primary immunodeficiency disease, epilepsy and cancer, Kelly’s extensive experience is colored by three decades of managing chronic health conditions. She draws on both her personal journey and professional expertise to educate, inspire, and empower those she serves. She channels a sincere passion for helping others facing chronic illness with previous experience as a teacher to lead and serve the bleeding disorders community. Kelly holds an MBA and MA in Education.

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Life in Transition

By Jacey Gonzalez

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Transition for some comes easy. Pivoting and taking another path is something they can execute with little to no thought. I am not that person.

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Due to various medical conditions that included a cancer diagnosis at a young age as well as a bleeding disorder, I was kept somewhat isolated from the rest of the world. My life was kept in a bubble, and usually my mother intervened before anything got into our bubble. Stability was key in keeping a sick child as healthy as possible. This is true for many children affected by a bleeding disorder, especially those with an inhibitor or children diagnosed in families with no history of bleeding disorders. Parents are often naturally inclined to protect their child from experiencing bleeding episodes, damaged joints, extra infusions, and trips to the emergency room. Not intentional, but parents of kids with bleeding disorders sometimes hold their kids back and hinder them from being able to easily transition to adulthood. They tend to want to do for their child be it due to fear, feelings of guilt, or the need to be in control. 

When I started kindergarten, I thought I would be brave, make friends easily, and breeze through school because I was already “advanced” for my age. On the very first day of class, I hopped out of the car in front of school—I didn’t want my mom causing an emotional scene. I walked by myself to the playground where the other kindergartners were gathering; however, as I approached, I started crying silently, wishing I had a hand to hold. Nothing had prepped me in my 5 years of isolation to be able to face new kids and make friends.

If you think I grew out of it by now as an adult, you’re wrong.

Every first day of school has started with tears. Even in college when I thought I was ready to explore a new place and new experiences with new people, I drove to my mom’s hotel at 5 am the day she was leaving and sat against her door crying until she opened it. No matter what change in life came my way, I resisted—even when I knew it was for the better. 

During 2020, I felt unhappy and anxious. The pandemic had just hit the United States; like many others, I was in a constant state of fluctuation and felt like I couldn’t catch my breath. The immediate mask mandates, adjusting to working alone from home, being isolated from family and friends, and the constant fear I was going to inadvertently do something that would affect my health made me lose all sense of stability. The changes beyond my control were making me feel like I needed to rewrite my dreams and aspirations on a weekly basis. 

Finally, to keep from totally crumbling, I leaned into the changes being experienced. Step one was to leave a very negative work environment that had crushed my spirit in my 14 months of employment, with the goal to find a position where I would feel pride working for the organization and feel satisfaction in my role and contributions. I found an incredible opportunity 2700 miles away in Boston, Massachusetts and somehow convinced them to hire me.

The next step was harder. I owned my home in Nevada, which now had to be sold before I would be able to move across the country. My house meant the world to me. It was mine, my pride and joy, that made me feel safe and comforted. But in order to grow, it meant I had to take chances and let go of things (good and bad)  that may have been making me feel safe but were getting in the way of moving forward with my life. I’m sure you’ve heard the old adage, “diamonds are made under pressure”, and immense pressure is exactly what I was feeling.

To grow, I had to part with “home.” The place that held my secrets, that helped me battle my health conditions, my parents and much younger siblings, loud laughs with close friends, and enough memories to fill a multitude of photo albums. As someone who is a culmination of all her memories, this was a struggle for me, but I needed to keep moving forward.

With a brave face, I sold my home and didn’t shed a tear. I turned in my two weeks’ notice at my job with a sincere smile. I said goodbye to my parents and to my brothers and sister who I knew would be growing up without their older sister within driving distance. I packed up 23 years’ worth of memories, put them in a trailer and drove to Massachusetts. Feeling refreshed and strong, I had finally grown out of the “anxious Jacey” stage of my life. It felt like a cheat code had been unlocked, and I was taking full advantage of it. I felt invincible.

For six days this attitude worked until I found myself standing on a train platform on my way to a new job in the middle of a new city where I didn’t know a soul. Underneath it all and with all my newfound bravado, I was still the scared little girl I had always been. Sobbing uncontrollably, I hoped my mom would answer her phone. She did, and told me something that would define my outlook on life from that day forward. “Jacey, you need to let go of the expectations you had for yourself with this transition. The expectations are killing you.”

She was right, I was killing myself for not living up to my own expectations about being fine with transition. Transition isn’t linear. There isn’t a playbook for how one should make major life decisions. You have to go with it and believe in yourself at least a little to get to the edge of the ledge. Eventually, by digging deep and taking chances, you will find the thing that pushes you to take the proverbial leap.

We need to stop comparing ourselves to what we had hoped to be and to whatever expectations others hold over us. Transition is scary, even without having to manage a health condition or a raging pandemic. Life around us is always changing, and we all need to embrace it to have the ability to move forward.

Take transition at your own pace. Set boundaries and attainable goals. Recognize that parents, loved ones, doctors, and others in your life are just working with what they know and with what they are going through at the moment. Don’t bother to regret or blame the situations of your past or your health challenges.

Understand that you’re not alone. Appreciate that others who live with a health condition like hemophilia and von Willebrand may be struggling as well. Reach out to others who may be going through what you are and see how they handle their transitions. Sometimes just sharing your experiences with a like-minded person can be insightful and healing and provide strength. Offer support to one another, and let’s learn to pivot and move forward. We’ve got this!

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Meet the Team: Shelby Smoak, Ph.D.

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Shelby Smoak is a tireless advocate for patients with chronic health conditions. In the 90s, his experience living with a bleeding disorder and HIV led him to become actively involved in advocacy, especially as it pertains to the ever­-changing dynamics of healthcare.

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Shelby helps others understand complicated health policy and serves as a voice for patients with rare conditions across the nation. He’s been featured on TV and radio, including NPR. Shelby served on the board for Hemophilia Association of the Capitol Area and currently serves on the Pfizer B2B board.

A former literature professor, Shelby is also a writer and a musician. Awarded a Pen/American grant for writers living with HIV, Smoak holds a Ph.D. in Literature and an MA in English. His book, Bleeder: A Memoir received praise from sources as diverse as The Minneapolis Star Tribune, Library Journal, and Glamour, and has won several awards, including Best of the Best by the American Library Association.

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Meet the Team: Kelly Lynn Gonzalez

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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 better.

In this edition we feature Kelly Lynn Gonzalez.

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Kelly Gonzalez is a patient, the parent of patients, and the spouse in the rare disease community. Having personal experience in bleeding disorders, autoimmune diseases, PIDD, epilepsy, and cancer, Kelly presents education drawn from a lifetime of personal and professional experiences.

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Kelly has traveled nationwide presenting for various non-profit organizations within the bleeding disorders community.

Her educational presentation style shares her journey and educates and empowers the audience. She channels her past experience as a teacher and infuses her passion for persons with chronic illness into heartfelt and dynamic programs. Kelly holds an MBA and MA in Education.

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Meet the Team: Jeff Johnson

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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 better.

In this edition we feature Jeff Johnson.

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“As a hemophiliac, my role as a Regional Care Coordinator has allowed me to continue a lifelong passion of advocating, educating, and looking out for members of the bleeding disorders community.

Working as a member of the care team has given me joy as I help my community thrive by supporting therapy adherence, minimizing bleeding episodes, navigating insurance and coverage challenges, and working one-on-one to help patients stay bleed free.”

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Jeff Johnson is a dedicated, active member of the bleeding disorders community. His commitment to those he serves is evident in the exemplary service and support he provides. Jeff works tirelessly to build community and create a larger voice for a group with unique and essential needs, which has not always been heard.

His extensive leadership experience includes serving as the bleeding disorders camp activities coordinator in Oregon, as a counselor at numerous other camps, as a previous board member for Hemophilia Foundation of Oregon, and working with the Hemophilia Federation of America (HFA) to set up a local Blood Brotherhood program.

Jeff is also a writer whose work has appeared in HFA’s newsletter, PEN from LA Kelley Communications, and various chapter and community publications. In whatever capacity he can make a difference, Jeff is passionate about advocating for and serving the interests of the bleeding disorders community at a local and national level.

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Tell us about yourself.

I was born in Denver, Colorado to a couple of teenage sweethearts who were not ready for a kid, especially one with hemophilia. My first few weeks were with a foster family as I was passed over for adoption. My parents came along and were told they could wait three years or take this little hemo-baby right away. They jumped at the chance.

We moved around a bit until my folks put down roots in Vancouver, Washington. Growing up, our home was generational—there were always elders, cousins, nieces and nephews, grandbabies, and a variety of scruffy dogs and cats running around. My family was always bursting with life, love and laughter! The first time I ever lived in a home of fewer than 12 was after high school when I moved out to pursue college, make music, and see the world.

Today I live with my wife of 16 years, Stephanie, and our toddler, Lily. In 2008, we packed up and made the long and arduous trek east from Vancouver to Camas, 10 minutes down the highway, where we currently reside.

Due to hepatitis C contracted from tainted clotting factor, I was unsure of ever having a baby. I did not want to pass the virus to my wife, nor risk not being there for a child. Thanks to a new effective medication, my hep C was cleared in 2017. Soon after, Lily was on her way! We are open to adopting a child in the next couple of years. The gratitude I have for my adoptive family is indescribable, and I want to pay that forward.

The most noteworthy things about myself are as follows: I was born in the 1970s with hemophilia and am still alive today. I spent a summer living in a small town just outside Paris and was conversationally fluent in French. I was a jazz musician for many years and served as Master of Ceremonies at the largest high school jazz festival in the Pacific Northwest for two decades.

I once had a life-threatening GI bleed, and nine days after treatment, I was hiking the Great Wall of China after a jazz gig in downtown Beijing. As a writer, I’ve had several articles about hemophilia and living with a disability published. I am an ordained secular minister and have performed 15 wedding ceremonies. And I love Star Wars, which is neither unique nor remarkable, but I had to put it out there!

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What is your connection to the bleeding disorders community?

I have severe hemophilia A and very much consider the community to be my family. I learned my birth uncle had hemophilia and it was suspected I would too, which is partially why I was placed for adoption. Coming of age during the “hemo-caust” of the early 80s, I was a young camper who saw nearly all my early friends and heroes with hemophilia succumb to AIDS and HCV. I have been involved in the community in various capacities most of my life. Wherever and whatever I’ve been up to, the community has always been as much my family as the wonderful knuckleheads who adopted me.

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What brought you to BioMatrix?

I loved the idea of caring for my fellow hemos and participating in more community events. I also wanted to learn about the industry from the inside, hoping it would make me a better advocate. So, I called a friend who had reached out to me previously about coming to the company, and after interviewing, I accepted a position with BioMatrix. Soon after, an opportunity was presented to work closely with the Boise, Idaho Hemophilia Treatment Center—it’s been a wonderful experience!

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What part of being a Care Coordinator do you cherish the most?

That’s a tie between my patients and my peers. Nothing beats chatting daily with other bleeding disorders families. It’s sometimes challenging because I have to switch when interacting with my patients from my “Care Coordinator” hat to my “hemo-Yoda” hat that I’d wear if they were just a community friend, but I cherish it all, nonetheless.

Equally important to me are the people I work alongside. I trust my co-workers to take care of my hemophilia family and to do it correctly and compassionately. I am often humbled by the dedication, understanding, and care I see my fellow RCCs direct towards their patients. It makes me immensely grateful to know these are the people who are looking after my people. The people I work with are the best, and the people they care for, I consider my dearest family.

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Describe your most difficult challenge.

In the past and still today, having hemophilia has been my most difficult challenge. It was the reason I was orphaned, caused the loss of my childhood camp friends, gave me hep C, and has inflicted daily pain since grade school. I overcame the challenges because of the examples I had to look up to—those who taught me to make hemophilia my strength instead of my weakness.

My health condition has made me stronger, shown me how truly precious life is, armed me with a sense of empathy and humor, and connected me to the most amazing people who walk this Earth. So hemophilia is definitely the highest hurdle I’ve ever had to jump, which is ironic because it’s also the reason my arthritic body is incapable of jumping. I manage to overcome it, again and again, every day because it also drives me, gives me purpose, and allows me a way to serve others.

To contact Jeff, call or email: 360-553-6402, jeff.johnson@biomatrixsprx.com

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BioMatrix Presents: The Community Playlist

By Shelby Smoak, Ph.D.

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A lyric from a favorite band of mine, Wilco, has always stuck out to me. When Jeff Tweedy sings, “I was saved by rock n’ roll,” I can’t help but think of all the ways rock ‘n roll has saved me.

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It began with Billy Joel during my knee synovectomy at age 10. Music became the root for my recovery, and my growth throughout high school and college.

Music distracted me from self-infusion needle sticks and the half hours pushing in 60cc of clotting factor. It saved me from the pain of physical therapy when recovering from a total hip replacement, later a knee replacement, and from a traumatic month-long knee bleed. Music still saves me at 2 am when the pain of a bleed won’t let me sleep, or when I’ve been stuck in an ER for hours. And so, I let music save me, because it can, because no matter what pain I am in, nor what joy I may feel, it is there for me—always. I have come to realize my experience is not isolated. A plethora of our community members lean into music as their own, unique salvation: a balm to the hurt, a salve for the pain.

Through the BioMatrix Education program “Singing to Heal” which I often lead, I hear the same message about the power of music in other community members’ lives. Moreover, I am awed and impressed by the ways this suffering gets channeled into their musical creations, much like I do in my self-styled project, Bleeder, where memoir and music-creation blend. While we may not “write the songs that the whole world sings,” we may write the words our community can feel. 

Without further ado, I invite you to check out this community playlist of original music from people with a bleeding disorder. It’s been a pleasure to hear their songs, to feel their power, and now, to share them with you.

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“busting out the darkstar >country trux”

Billy Conde Goldman (creature-blossom)

Genre: Experimental; Harmolodic Rock ‘n’ Roll

For fans of: Mr. Bungle, Frank Zappa, Mike Patton

Shelby’s take: Atonal saxophone, a vocal cacophony of hypnotic and recurring lines, marching snare rolls, haphazard melodies, and fuzz guitar chords make this song a late-night, coffee-fueled journey into post-modernism.

On having hemophilia A: “Of all the songs I have written since I was a kid, only one mentions hemophilia in word. That said, many songs express pain, loneliness, sadness, fear and anger in the music and the lyrics—all a result of having a bleeding disorder. My sense is such expression would manifest in my songs no matter what, as life can be a struggle independent of wellness. Life can also be joyous and I have experienced much joy from being a part of the bleeding disorders community. This is also reflected in my songs.”

To Find: Search Google “creature-blossom busting out the darkstar”

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“That’s When I Love Her So”

Dave Colvin

Genre: Country/Folk

For fans of: Beatles, John Prine, George Harrison

Shelby’s take: A bouncy acoustic guitar, catchy vocals, and playful lyrics make this upbeat love song a pared down, perfect for your coffee shop, mid-afternoon feel-good moment. 

On having hemophilia A: 

“Basically since prophylaxis treatment, having hemophilia doesn’t impact my music. Back in the day though when giving “as needed” treatment, performances were always problematic. Now I can plan ahead and give factor the day of a performance if needed!”

To Find: Search on Spotify and Apple Music: Dave Colvin That’s When

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“Keeping Up”

Shawn Decker Co-written with Kyle Wiggins (Synthetic Division)

Genre: Electronic Dance Music

For fans of: Pet Shop Boys, Depeche Mode, New Order

Shelby’s take: Arpeggiated synthesizers, distorted synth-bass rhythms, driving EDM beats, a tasteful application of keyboard melodies, and understated vocals make this track the perfect late-night club companion.

On having hemophilia A: “Embracing every aspect of my life is important as a songwriter, and my bleeding disorder is certainly part of the equation. Finding peace through adversity has helped me deal with some tough situations medically, and I certainly draw upon that theme quite often in my music.”

To Find: Search on Spotify and Apple Music: Synthetic Division Keeping Up

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“Lend Me a Hand”

Spencer Duggan (Skydiver)

Genre: Alternative Rock

For fans of: Radiohead, Elbow, Doves

Shelby’s take: A soft-strummed acoustic guitar, ultra-clean guitar licks, rolling bass lines, jazz-esque drum play; the drift of falsetto vocals carry the song along like the ebb and flow of a quiet city night, lending this song the ideal track for drinks and a rooftop bar.

On having hemophilia B: “Hemophilia played a large part in discovering my love for music. It is a great way to reset my mind even when things are hard. I consider myself lucky to have it under control so I can keep making music for myself and my local chapter for years to come.”

To Find: Search on Spotify and Apple Music: Skydiver Lend Me a Hand

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“Spratz”

Max Feinstein

Genre: Alternative Rock/Grunge

For fans of: Ween, Fountains of Wayne, Radiohead (Bends-era)

Shelby’s take: Infectious distorted guitar riffs, fluid bass lines, a driving chorus, energized vocals, and amazing studio production make this song a pool party instant hit.

On having hemophilia A: 

“Joint damage makes it physically difficult to play and has influenced the stylistic aspects of my songwriting. In addition to producing spontaneous bleeds, hemophilia can produce a lot of rage. We don’t want that rage to bleed out into the wrong places, much like bleeding into the wrong places. Music was the safest place to channel my aggression and in doing so, it became catharsis.”

To Find: Search on Spotify and Apple Music: Max Feinstein Spratz

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“Remnants”

Trevor Graham (Organ Dealer)

Genre: Punk/Grindcore

For fans of: Napalm Death, PLF, Death Toll 80K

Shelby’s take: Adrenaline fueled angst, thick chugging guitars, propulsive bass lines, snare hits faster than you can clap, and screaming, deep throated vocals thrust this song at you; for half a minute, the song clobbers you with its punk-on-steroids energy.

On having hemophilia A: 

“It makes touring a little difficult sometimes, lots of standing which impacts the joints, then [there is] the trouble of finding a place to infuse.”

To Find: Search on Spotify and Apple Music: Organ Dealer Remnants

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“You are Not Alone”

John Harrison (Jphono1)

Genre: Alternative/Indie Rock, Jamz

For fans of: Flaming Lips, Pink Floyd, Kurt Vile

Shelby’s take: Chill groove, in the pocket bass, 70s-feel guitar lines, fuzzed-out playful organ lines, and Pink Floyd-esque vocal delivery makes this a perfect sunshine, porch-time play.

On having hemophilia B: 

“It’s not a daily concern but have had internal bleeds that have forced me to cancel live events. Hospital visits and making sure there is factor in my fridge for emergencies. Creatively, it’s such a small part of my life it doesn’t come into play... but I imagine it’s in there in some ways I couldn’t identify.”

To Find: Search YouTube: jphono1 You are Not Alone

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“Go-To”

Trevor Martin

Genre: Pop Country

For fans of: Kane Brown, Dan + Shay, Brett Young

Shelby’s take: Rolling piano lines, country-telecaster licks; immediate and intimate vocals, the incredibly hooky “Go-To” refrain lands this song somewhere between country ballad and R&B. A supreme listen for driving with your windows down and your hair blowing in the country breeze.

On having hemophilia A: 

“Having hemophilia really impacted me earlier on in life. It helped me discover that I really enjoy and have a passion for music. I am not sure I would have discovered that as quickly had I been playing football or another sport.”

To Find: Search on Spotify and Apple Music: Trevor Martin Go-To

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“No Way Josè”

Robb McDowell (Louisville Lip)

Genre: Punk/Alternative Rock

For fans of: Social Distortion, Bad Religion, The Stooges

Shelby’s take: Distorted guitars, thudding basslines, locked-in pounding drums; throaty vocals with vitriolic angst drive this song into a high-energy, cathartic vent – ideal for blasting on a warm summer night classic car ride – top down, open and free.

On having hemophilia B: Having a bleeding disorder is probably one of the main reasons I got into writing music among other things. It’s a way for me to express my mood and how I’m feeling. I’ve never been one to talk about “feelings” so this was the best way for me to get things out.

To Find: Search on Spotify and Apple Music: Louisville Lip No Way Jose

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“Be Mine”

Tamar Mitchel

Genre: R & B / Pop

For fans of: Justin Bieber, Chris Brown, Justin Timberlake

Shelby’s take: Hip-hop beats dipping into classic 808 tones, a catchy repetitive guitar line, a head-nod bpm, and tripped out vocals make this song a smooth ride for a late evening city stroll. Mixing soulful R & B with modern electronica carries this tune into sultry perfection.

On having hemophilia A: 

“Having hemophilia impacts my music by helping me have the drive to want better for myself and my family. It pushes me to be my best possible self and in doing so, helping others.”

To Find: Search on Spotify and Apple Music: Tamar Mitchell Be Mine

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“A Collection of British Invasion Hits”

Bobby Murdoch (The British Invasion Years)

Genre: 1960s Rock

For fans of: The Beatles, The Who, The Zombies

Shelby’s take: The nostalgia of jangling guitars, bouncing bass lines, psychedelic keyboards, and familiar lyric sing-alongs make this cover band the ideal live show flashback. Infused with psychedelic hearts, these cover songs nail the 1960s vibe and ooze groovy, mind-bending bliss.

On having hemophilia A:

“Music has always been a way to forget about my bleeding disorder. It also motivates me to continue performing.”

To Find: Visit britishinvasionyears.com and click Videos

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“Glide”

Cleaven Pagani

Genre: Alternative

For fans of: Radiohead, Elliott Smith

Shelby’s take: Delicate guitar picking, tasteful keyboard subtexts, and whisper-intimate vocals that ponder the burdens of life make this trimmed down song the end-of-night, goodnight, best-friend companion.

On having hemophilia A: 

“I write songs about my life, which includes living with a bleeding disorder. With this song, I attempt to describe how we glide through life encountering many crazy things. It could be a bleeding disorder, psychological illness, divorce, or other situation. We all have burdens to bear that can be unexpected and terrible, but everything is okay when we have someone we love with us.”

To Find: Search Bandcamp: Cleaven Pagani, Click Stargazer, 1st track

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“Pain”

Shelby Smoak (Bleeder)

Genre: Alternative Rock/Shoegaze

For fans of: Radiohead, The Cure

Guest reviewer’s take: A medley of sound with a mixture of new wave alternative, grunge, rock, and indie. Sweet guitar intro with melodic back vocals and smooth bass guitar transitions into a blend of guitar and toe-tapping percussion and fills. The lyrics and message are unmistakable as it not only relates to those with a bleeding disorder but can resonate with anyone living with pain.

On having hemophilia B: 

“Music has always been a solace for me. It comforts when nothing else can. Writing music does the same thing. A song like ‘Pain’ gives voice to something hard to articulate: living with the chronic pain of hemophilia.”

To Find: Search on Spotify and Apple Music: Bleeder Pain

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Music, Health and Feeling Groovy!

By Elizabeth Van Sant

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The simple act of listening to music can have powerful impacts, but by actively making music, both your physical and mental health can improve tremendously.

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When you listen to a song, various parts of your brain start lighting up. Your temporal lobe helps process tone and pitch while your cerebellum aids in processing rhythm and timing. Your amygdala and hippocampus also activate by tugging on your emotions and memories. These different parts of the brain work together to help you make sense of the auditory stimulus that is your favorite summer jam. 

If that’s already at work when listening to music, think about all the other parts of the brain that light up when you pick up an instrument or start singing. For example, your motor cortex goes crazy to help sweep a bow across a violin or move your fingers on a keyboard. I could get lost down a rabbit hole when thinking about how amazing the brain is when stimulated by music, so let’s instead dive into why music makes you feel the way it does.

Music and emotions are intrinsically entwined. Think back to this morning’s workout routine: Were you listening to music? Was that music upbeat or slow and contemplative? Chances are, it was “pump up” music that made you want to keep going. Had you put on a sad song you likely may have either a) quickly changed tunes or b) decided working out wasn’t in the cards for you today. If just listening to a song can evoke such reactions, pretend you’re now actively creating music. Suddenly, you have a new, creative way to express how you are feeling.

You may want to relax and unwind so you play some slow, meditative music. Or perhaps you want to process what you experienced during the day so you create something to evoke those feelings: it might be fast to evoke a hurriedness or anxiety you felt, or it may be incredibly slow to portray a sloth-like mood you experienced.

There is another huge impact for health—having a community! Being part of a band or choir is an easy way to create a network of like-minded individuals. This has been extremely difficult to achieve during the pandemic, but once people are able to safely gather and create music, I encourage everyone to join a group, or even just go see a show. The mutual love for music will likely lift your spirits in just a few minutes.

We’ve discussed the benefits that music provides for improving mental health, but did you know that listening to or playing music can also aid you physically? Let’s do an experiment: I want you to go on a walk and listen to music. Put your favorite playlist or album on and just walk. Now, notice your pace in relation to the music you’re hearing.

Chances are, you are matching your gait pattern to the tempo, or speed of the song. If your body can adjust and move itself to the beat, think about what it does on a deeper level. Your breathing and heart rates can also adjust based on the outside, rhythmic stimulus. This can be a game changer when it comes to chronic pain because it allows you to just be present with the music instead of putting focus on slowing your heart and breathing rate.

Now that you’ve read some of the mental and physical benefits that both listening to and playing music can have, I encourage you to turn up the tunes or pick up an instrument. Enjoy the creative process, and move your body to something groovy!

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About Elizabeth VanSant, MT-BC
Elizabeth is a board-certified music therapist who primarily works with neurodivergent and disabled people in Seattle, Washington. When not making music, Elizabeth can be found on hiking trails, baking something delicious, or snuggled up on the couch with her cats.

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Meet the Team: Terry Rice

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Terry Rice has been a lifelong advocate within the bleeding disorder community. He has served on the Board of Directors for local and national bleeding disorder advocacy organizations and was one of the original founders of the Hemophilia Federation of America (HFA) in 1994.

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Throughout the 1990s, Terry spent significant time educating members of Congress in Washington DC regarding legislative initiatives furthering the interests of persons with bleeding disorders. Terry also served a two-year appointment as the community voting member on FDA’s Blood Products Advisory Committee. He has held various management and executive positions within the healthcare industry for over 20 years.

Terry is a person with a bleeding disorder and his passion is to empower people with a chronic illness. Terry earned his bachelor’s in chemistry and has studied master’s level economics concentrating in health economics.

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Disability Happens— Short- and Long-Term Disability

By Shelby Smoak, Ph.D.

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In the last BioMatrix News issue, we focused on Social Security Disability, a government-supported program available to you if you have worked and paid into the disability program and are dealing with a disability/injury that will prevent you from working for a year or more.

This article focuses on short- and long-term disability plans that are protective financial coverage for persons who become unable to work for, typically, a shorter length of time. While there are many differences between Social Security Disability and short- and long-term disability coverage, a glaring contrast is that SSDI in addition to financial support will also offer you healthcare coverage via Medicare should you qualify; short- and long-term disability policies, however, are intended for financial security only.

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Can a Disability Happen to You?

Certainly, members of the bleeding disorders community may likely answer a resounding “YES!” but too often those same persons may lack the financial protection of a short- and long-term disability policy.

In America, 51.2 million people, over 15% of our population, have at least one disability.¹ Automobile accidents account for 2.8 million disabilities per year while home accidents contribute to a disabling injury every 3 seconds. Every year 5.6% of Americans experience a short-term disability.²

A bleeding disorder does not exclude a person from being subject to the possibility of another kind of disability. In fact, having a bleeding disorder may likely compound a disabling injury or illness, lending the need for short- and long-term disability insurance more imperative. Remember, a bleeding disorder does not make you immune to other health complications.

In addition, many caregivers of persons with bleeding disorders may have become so focused on their loved one(s) that they overlook protecting themselves from the same disability potential. A survey done by the Council for Disability Awareness revealed that over half of American families did not have enough money in savings to cover three months of living expenses (the average length for a short-term disability).³

So, if you are injured and unable to work, whether this is bleeding disorder-related or not, what is your plan for earning income and paying bills? If you need surgery for a joint replacement or any other bleeding disorder-induced complication, how will you pay bills during your recovery period? Having a short- and long-term disability policy will provide income for any unforeseen injury or illness, inside or outside of your bleeding disorder.

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What Is Short-Term Disability Insurance?

• Short-Term Disability is a type of insurance benefit that provides some compensation or income replacement for non-work-related injury or illness that renders you unable to work for a limited time.

• “Non-work related” is important because injuries that happen on the clock will normally fall under workers’ compensation policies.

• Common reasons for short-term disability are pregnancy complications, herniated discs, cancer, accidental injury, surgery, and mental health challenges.

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What Are Typical Short-Term Disability Policy Coverage and Rules?

• While benefit payment is plan-specific, on average a short-term policy pays 50-60% of your earned income when you are unable to do your job for a short amount of time.

• Premiums are based on age and annual gross income but are typically 1-3% of your earned income. A person earning $50,000 a year can expect to pay $500-$1500 annually for a plan.

• Many employers offer plans, or you can self-purchase a plan at, usually, a higher cost.

• These 5 states require employers to offer short-term disability policies: California, Hawaii, New Jersey, New York, and Rhode Island.

• The definition of “disability” is plan-specific and can sometimes be ambiguous, so please read the fine print when signing up for a policy.

• Policies can be valid for 30 days to a year but are typically intended for 6 months or less of use.

• Benefits will end when your policy coverage period concludes, when your predetermined time period is over, or when you return to work.

• If you are unable to return to work when a short-term policy terminates, a transition to a long-term disability policy or Social Security disability may be necessary.

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What Is Long-Term Disability Insurance?

• Long-Term Disability provides insurance if you are out of work for a long period of time: usually years.

• While benefit payment is plan-specific, on average a long-term policy also pays 50-60% of your earned income when you are unable to do your job.

• Premiums are based on age, occupation, and annual gross income, but are again typically 1-3% of your earned income.

• Many employers do not offer plans, so you may need to self-purchase a plan. If an employer does offer a plan, it may not give the coverage you need, so acquiring a supplemental policy like AFLAC may provide more adequate financial coverage.

• Policies are usually valid for 2-5 years, or until age 65.

• Benefits will end when your policy coverage period concludes, when your predetermined time period is over, or when you return to work.

• If you are unable to return to work when a long-term policy terminates, a transition to Social Security Disability may be necessary.

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What Are the Basic Types of Long-Term Policies?

There are 2 basic types of long-term disability policies: Own-Occupation insurance and Any-Occupation insurance.

1. Own-Occupation disability insurance defines a disability as an inability to work at your present occupation, even if you can work at another. For example, consider you are a truck driver but experience an illness that results in vertigo and partial blindness. You are no longer able to drive due to these issues. An own occupation disability would provide coverage for your inability to work in your present job—truck driver.

2. Any-Occupation disability insurance covers you if you are unable to work at any occupation. In the example of the truck driver, an any-occupation policy would unlikely offer payment for job loss. While you may no longer be able to perform your normal daily work of driving, an any-occupation policy would consider you still employable as perhaps a dispatcher or some other non-driving position.

Ultimately, the own-occupation policy is more desirable since if you were to become disabled in any way, you would only need to show an inability to work in your present job, which can be easier to prove. These policies, however, are more expensive, or they just may not be offered through your plan.

An any-occupation policy is more common, is more affordable, but is sometimes harder to prove. If you were to become disabled, you would need to show that with your skillset and (lack of) ability you are unable to do any other kind of job, regardless of what your employment was at the time of your injury or illness. For the above example, it may be difficult to prove the truck driver is unable to do any other kind of work.

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Should I Pay Premiums Using Pre-Tax or Post-Tax Dollars?

Deciding whether you should pay short- and long-term disability policies with pre- or post-tax dollars is a complicated equation. Basically, if you pay for a disability with pre-tax dollars, the taxes would be saved by you immediately, but would be taken out when you receive payouts from the policy; likewise, if you pay for a disability policy with post-tax dollars, you will see less realized income now, but your income would be greater upon the policy payout. Ultimately, you have to assess whether it is more important that you have additional money now by paying for the policy with pre-tax dollars, or later, by paying for the policy with post-tax dollars.

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How Does Short- and Long-Term Disability Integrate?

A short-term disability policy typically offers coverage for 90-180 days, 3-6 months; the policy may have an elimination period of 0-14 days, in which case you would need to rely upon your employee benefits for financial stability. If you are unable to return to work when the short-term policy terminates, the long-term policy takes over at that 3- or 6-month mark, depending on the long-term policy rules. Long-term policies usually have an exclusion period of 90-180 days, about the length of the typical short-term policy. Once the long-term policy is active, the benefit duration is 2-5 years, or until age 65.

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Will a Short- and/or Long-Term Disability Policy Provide Enough Income to Maintain My Current Standard of Living?

The hard answer to this question is no. Short- and long-term policies only provide up to 50-60% of your current income, so unless you are not using almost half of your income each year, the financial change will be felt.

Consider if a person (let’s call him Joe) is currently employed, earning $60,000/yr. but then becomes injured and must apply for his short-term disability policy benefits because he is unable to return to work. Before, Joe received $1150 weekly; with a short-term policy paying 60% of his salary, Joe will be reduced to $690 a week.

Luckily, Joe paid his premiums with post-tax dollars and will receive the full $690. Unfortunately, Joe does not recover, is unable to return to work, and his short-term policy is terminating. He must apply for his long-term disability benefits, which also pay 60%. However, Joe used pre-tax dollars to pay for his long-term policy, and thus taxes will be taken out of his payment. Joe is paid $690 weekly by his policy but 15% taxes are taken out, so Joe instead receives $586 a week.

Effectively, Joe’s disability and his inability to return to work have, in a matter of months, reduced his realized income from $1150 to $586 a week. Unless Joe has considerable savings or another form of unearned income (stock, for example), Joe would unlikely be able to maintain the lifestyle he enjoyed before the disability. This is the hard, grim truth. However, consider if Joe failed to secure short- or long-term disability policies, and instead of $586 would receive $0. Joe would likely be seeking government assistance via Medicaid or considering Social Security Disability, which would pay even less than a short- or long-term policy, but, moreover, may take a year or more for approval (see “Disability Happens” BioMatrix News Summer 2021). Without the support of a short- or long-term policy, Joe would be without any income or financial support.

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Ultimately, BioMatrix nor myself purport to be financial advisors regarding the economics of a disability. BioMatrix, however, is deeply vested in the sustained care of persons with chronic illness, and I, as a person with a chronic illness, am deeply vested in the sustained support for myself and others as we navigate the twists and turns of chronic illness and as we plan for the unexpected. So while on one hand it is heartbreaking to hear about persons confronting a disability, on the other hand, it is even more devastating when we hear about the dire financial straits the disability precipitated. Short- and long-term disability policies are support mechanisms to soften those financial losses.

Hopefully, this piece has you looking into those policies, reaching out to your employer about policy options, or picking up the phone to speak to a disability policy expert. While these policies may leave your financial glass only half full in the case of a temporary or long-term disability, that, I think, is a much better prospect than an empty glass.

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References

1. Council for Disability Awareness. “Chances of Disability.” Disabilitycanhappen.org. 

2. 15% figure gained by 51.2 disabilities out of 328.9 million Americans, 2019 Census stat.

3. Council for Disability Awareness. “Statistics.” Disabilitycanhappen.org.