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.
”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!
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!
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.
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.
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.
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.
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.
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.
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!
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.
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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