Jeff—On finding support and being an inspiration
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When did you find out you had hemophilia A?
When I was born, my parents knew there was a chance I’d have hemophilia A, because it’s hereditary and my mother’s two brothers had it. So when I was diagnosed as an infant, my parents were worried about the potential challenges ahead. They immediately contacted a university hospital nearby so I could get treatment, as well as the education they’d need to manage my disorder. I was fortunate that my mother knew exactly what to expect and how to care for me. She encouraged me to explore and let me find activities that I could participate in.
What was growing up with hemophilia A like for you?
When I was five years old, my parents sent me to hemophilia camp. It was the first time in my life I was around other kids with the same disorder as me. It was also the first time I actually was part of a community, which was great. I learned so much about hemophilia A and how to deal with bleeds and complications that can arise from this disorder. When I got my ”butterfly award,” which is given to campers when they self-infuse for the very first time, having the independence to take my factor and infuse all by myself was a big step in my development, and I felt a sense of personal satisfaction. To this day, some of my best buddies are people I became friends with at hemophilia camp.
“To this day, some of my best buddies are people I became friends with at hemophilia camp.”
What has your hemophilia A treatment journey been like?
When I was 13, I was playing basketball with my buddies and I twisted my ankle. I knew right away that I needed to get home and take my factor, because I could feel my ankle starting to hemorrhage. I went home and infused. While infusing, my mom brought me a sandwich and an ice pack for my foot. About 15 minutes later, the phone rang, and I could see my mom through the kitchen door, listening. She looked like she had just seen a ghost. I kept hearing her say, “He just took it! What do you mean? He just took it!” Her face got red. She was crying as she hung up, and she came over and wrapped her arms around me. I didn’t know what was going on. She said the shipment of factor I received might be contaminated with HIV and the call had meant to warn me not to use it. Unfortunately, that call came too late. I’d already infused the factor. I called my two uncles in a panic because both of them were treated at the same hospital, and likely had received the same factor—but I was too late. They had both already infused the tainted factor, too.
My mother immediately took me for a blood test and three weeks later, it was confirmed: I was HIV positive. The doctors informed my parents that I had maybe two or three years to live, and to be prepared for the worst. Both of my uncles ended up passing away from HIV complications, one six months later, and the other nine months later. Watching them get sick and then fade away was the hardest thing I’ve ever had to endure. I felt like it was only a matter of time before HIV took my life. But there I was, still standing. It was a struggle, but I was able to keep looking ahead.
How did you find out about ADYNOVATE® [Antihemophilic Factor (Recombinant), PEGylated]?
To see if it was right for me, I talked to my doctor about the benefits and potential risks, including the common side effects of headache and nausea, of ADYNOVATE, and we both agreed I could begin a prophy treatment regimen with it. The doctor wanted to make sure I knew what to expect. She knew that prophylaxis treatment worked well for me and thought that I was a good candidate for ADYNOVATE. I had no trouble getting on ADYNOVATE and Shire has a CoPay Assistance Program, for which I was eligible. Everything went through with my insurance right away. I like the product’s simple twice-weekly dosing schedule—which I infuse on the same days every week as prescribed.1 But remember, we’re all different and it’s best to talk to your doctor to see if ADYNOVATE is right for you.
What is your support system like?
My parents and family were always there for me. But everything changed when I met my beautiful and amazing wife, Tricia. Like me, she knew what it was like to grow up with challenges because she lost her hearing at two months old from the German measles. She also never thought she’d find her soul mate… that is, until we met. My brother and sister-in-law had invited me to a baseball game with them, and as I jumped into the backseat of their car, there was Tricia. It was love at first sight, and since then she’s loved me no matter what. She’s never let her disability stop her from achieving her dreams, and I’m proud to say she’s a world class gymnast and has performed with a well-known touring company as an aerial artist for three years. I feel like I’m the luckiest guy in the world.
Living life, being a good husband, and good son, a good employee, and inspiring people are my goals in life, now. I feel like I’m still here for a reason. Whatever that plan is for me lies in this direction. For me, there’s no better feeling than helping others, especially people who have hemophilia. I will never forget where I came from: I think of my mother, who always did her best for me, and I think of my uncles, of course, and my wife. All of them make me want to do better, to be better, and one day at a time, I’m making them all proud.
“I like the product's simple twice-weekly dosing schedule—which I infuse on the same days every week as prescribed.”1