Joe—Tells us how a hemophilia A diagnosis led him to his true calling
When were you diagnosed with hemophilia A?
I was diagnosed with severe hemophilia A when I was six months old; my parents noticed that I seemed to be in pain, and that I was bruising in my knee and ankle. They didn’t know it at the time, but I was having a bleed, so it was a good thing they took me to the pediatrician to get me checked out. After the blood work came back positive for hemophilia A, my parents learned that my mother is a carrier, which she was unaware of. My younger brother, Jake, and I inherited the disorder. So hemophilia A is all in the family so to speak— except—technically for my dad, although it impacts him too, and he’s been a pillar of support along with my mom.
What was growing up with hemophilia A like for you?
As a child, my parents treated me on-demand, and by the time I turned 12, I’d learned to self-infuse; I averaged about two bleeds a week. I admit that as a kid, I didn’t always use the best judgment, and consequently, I had three extremely serious bleeds during my childhood. When I wanted to compete in sports, my parents and I met with my doctor to talk through the risks associated with sports I was interested in participating. You should always check with your doctor before deciding to play these or other sports. I had a lot of careless accidents and problems; in all, I had two full shoulder surgeries and issues with my ankles.
My doctor and I have a pact that if I or anyone even suspects that I might be injured, I should call him or go to a treatment center immediately for care.
“My doctor and I have a pact that if I or anyone even suspects that I might be injured, I should call him or go to a treatment center immediately for care.”
I confess I probably had so many problems because I chose not to always listen to my parents—I just did what I wanted to do. But still, I think I had it better than a lot of other people because I knew that my parents loved and supported me. Unconditionally. They wiped away my tears and listened to my troubles when I was bullied in school. It was hard to explain my condition to my classmates when I was on crutches one day, but seemed okay the next, only to miss several more days of school. They thought I was playing hooky, when in reality, I had a bleed. Looking back, I hated going to school at times because I was an easy target, but as much as I hated to hear all of their snickering, I never let it show. Never.
Tell us about your treatment journey.
As far as my treatment is concerned, I go to my hemophilia treatment center once a year and meet with my hematologist and the other specialists on my team. My goal was to try to not have any bleeds. I was averaging about five bleeds a year. I was interested in ADYNOVATE® [Antihemophilic Factor (Recombinant), PEGylated], so I decided to talk to my doctor about it because of the safety and efficacy profile of ADYNOVATE, and I liked the idea of dosing twice a week on the same two days, which is a plus.1 I wasted no time to talk to my doctor about it and he felt it was the right choice for me. He told me that I can use ADYNOVATE on Mondays and Thursdays. This is just my schedule; be sure to work with your doctor to find a schedule that works for you. I also learned that ADYNOVATE is approved for use on-demand and for routine prophylaxis with hemophilia A. In addition, your healthcare provider may give you ADYNOVATE when you have surgery. Keep in mind that you should not use ADYNOVATE if you are allergic to mice or hamster protein or any ingredients in ADYNOVATE or ADVATE® [Antihemophilic Factor (Recombinant)].1
Since I have been on ADYNOVATE I haven't had any bleeds. Please keep in mind, though, that this is just my personal experience; you might have a different experience. That’s why it’s important to talk to your doctor to see if ADYNOVATE is right for you. Make sure to ask any questions you have about the product’s safety and efficacy, your treatment plan, and infusion training if needed. But remember, we’re all different and it’s always best to talk to your doctor.
How did growing up with hemophilia A influence you as an adult?
The turning point in my own life happened several years ago, when I was a junior in high school. I was at that awkward age and having a tough time; I was struggling from the bullying and my grades were suffering. But by then, the good thing was that I’d learned to take good care of myself. Yet, when I thought about my future, I had no idea what I was going to do. But everything changed when I finally decided that I’d had enough of getting bad grades. So I decided to really apply myself to math and science because they were logical; they made sense and I enjoyed that. I couldn’t change the fact that I had hemophilia A, but I realized that I was learning to take better care of myself and I was being proactive about my health. So why not hunker down and apply myself to something? That’s when I discovered that I had an aptitude for math and science. It clicked and I began to excel in school; my parents were so proud of me—especially my dad. The day I got my first 4.0, I was on top of the world! It gave me a tremendous feeling of accomplishment! That’s when I began to think: How can I use my abilities to help other people and make a better life for myself? Answer? I want to become a doctor.
“I began to think: How can I use my abilities to help other people and make a better life for myself? Answer? I want to become a doctor.”
When I got into college, I set my sights on being an eye surgeon, but later, I realized that I could not put my head down on the pillow at night and be happy. I had a passion for hemophilia. Between my brother and a younger cousin who also has it, and people I’d met over the years, I wanted to devote myself to helping people with hemophilia A. Part of my inspiration to follow medicine came from an amazing relationship that I had with my own doctor. Growing up, he’d always give me a big old hug and he talked to me like I was his son. And when I finally graduated from medical school, he came to my graduation party. He’s in his 80s now, but we still keep in contact and occasionally meet up for lunch.
Helping people and giving back to the hemophilia A community is important; in fact, I believe in it so strongly, that I’ve devoted my entire life to helping others by becoming a doctor. With my history, I feel I could really help my future hemophilia patients. In the grand scheme of things, I feel it’s my calling.