Aaron uses his strong support system, family history, and ADYNOVATE to manage his hemophilia A and live life to the fullest.

You have quite a family history with hemophilia A, can you share a little bit about that?

I've always been interested in how things work and how to make them work better. Actually, that's something I have in common with my grandfather. We both combined the two common things in my family: science and hemophilia. My grandfather, Murray Thelin, was a scientist living with severe hemophilia A. His lifelong struggle inspired him to work on a treatment, and he developed the first factor VIII concentrate. He's a special person in our family, especially with his legacy and the contribution he's made to all of our well-being, and I really wish I could've met him. But he helped fuel my childhood dream: to become a biochemist and someday cure hemophilia.

When did you find out you had hemophilia A?

My severe hemophilia A was detected before I was born. I was tested for hemophilia as soon as the doctor found out that I was a boy because my mom is a carrier. However, I did not have a bleed until I was about nine months old. My parents noticed that I was crawling unusually, not on my hands and knees, but with my elbows. They brought me to the emergency room and learned that I was bleeding. Fortunately, I didn't grow up spending much time in the emergency room.

What was growing up with hemophilia A like for you?

I used to have three to five bleeds a month. At the start of every school year, my parents and I would meet with the school nurse to talk about my hemophilia A and to let the nurse know what to expect. Some teachers tended to be overly cautious, but for the most part they'd let me play with the other kids.

Some kids teased me, but most didn't treat me differently, and we had fun together. I think most of the kids knew I had hemophilia but were too young to understand what it meant. When I came to school on crutches because of a bleed, kids would ask me if I broke my foot. They didn't understand when I said that I woke up like that. Because I was only on crutches for about a week at a time, some kids accused me of faking an injury to get out of gym. My disorder required thick skin, but I used big words to explain what was going on, and that often did the trick. This all got better as everyone grew up.

By high school, I wasn't teased so much. I was open about my hemophilia A, and the fact that I gave myself IVs became my go-to when teachers asked students to “share something interesting about yourself.” I'd learned how to infuse myself when I was seven years old at hemophilia camp and I've been doing it entirely on my own since I was eight or nine. If you're not already self-infusing, be sure to ask your healthcare team about getting trained by your HTC or healthcare professional.

Hemophilia camp was a family tradition every summer since I was born. I loved camp; it was better than Christmas! Since my sisters and I are close in age, we would be in a lot of the same groups. It was fun to have people I knew, but it was a special treat to play with other boys my age. Camp helped all of us understand hemophilia and talk to other people who were in our shoes.

How did you find out about ADYNOVATE?

There have been different phases in my life when I've hated hemophilia and others when I was okay with hemophilia but hated daily prophylaxis. I often thought of prophylaxis treatment as a chore—and who likes doing chores? But I knew the importance of treating and never skipped it.

So, I was interested in learning more from my doctor when I heard about the extended half-life of ADYNOVATE^® that I could take on the same two days every week. ADYNOVATE is an injectable medicine that is used to help treat and control bleeding in children and adults with hemophilia A. ADYNOVATE can reduce the number of bleeding episodes when used regularly, which is called prophylaxis. Also, ADYNOVATE is not for people who are allergic to mice or hamster protein, or who are allergic to any ingredients in ADYNOVATE or ADVATE^® [Antihemophilic Factor (Recombinant)].

What is your support system like?

My family has always been supportive and encouraging. My four sisters were never jealous of the extra attention I received because of hemophilia. They were so helpful whenever I had a bleed, like bringing me ice packs when I was stuck on the couch. When I was in middle school, my sister and I developed a tradition. She's right-handed and I'm left-handed, so after I infused at my IV site, she would hold pressure for me. We'd sit next to each other eating our cereal, me with my left hand and her with her right hand. My mom encouraged me to stay active using the National Hemophilia Foundation (NHF) chart to find activities that were appropriate for me. Always talk with your doctor to determine what activities are appropriate for you. I feel like being active while I was growing up helped me. Plus, my parents always told me to lay low, or rest, whenever I had a bleed.

My wife has also been great at supporting me. We dated in high school and I was always open about my hemophilia A. My local boys club project was to organize a fun run, called the Clot Trot, to promote hemophilia awareness. This has become an annual event around National Hemophilia Day for the past 12 years. My wife has been at all of them. She's going to be a physician assistant, and she's known quite a bit about hemophilia for a long time. Once we started dating seriously, she wanted to know what hemophilia would mean for us. She asked me questions that I'd answer honestly, like, “What is hemophilia like every day? What are the negatives of hemophilia? If we have kids, would they have hemophilia?” She's even volunteered at camps and national hemophilia events.