I was born with severe hemophilia B in Galveston, Texas, 64 years ago. Before my birth, the doctors knew about my mother’s significant family history. My grandmother lost five brothers in their infancy from bleeding, so my parents were prepared with a relative in the delivery room, ready to give me a direct transfusion if necessary. Fortunately, I didn’t need one.
When I was young, I was hospitalized for all my bleeds. By the time I was 12, I had spent a third of my life in the hospital. I learned a lot about Cartesian geometry by mentally connecting the dots in the acoustical tile ceiling of my rooms. Watching plasma flow through the tubing taught me about hydraulics.
I’ve been involved in hemophilia research for over 50 years. I participated in preclinical trials of peanut flour and snake venom as methods to control bleeding, as well as some of the first trials of fractionated plasma products.
When I was about 13, my life changed dramatically. First, the fractionated fresh frozen plasma (FFP) that I had tested years earlier became available, so my doctors could treat me as an out-patient. Next, my dad bought an airplane. It took me an entire year, but I managed to convince the FAA medical examiner that a person with hemophilia could fly. I soloed when I was 15, before I had a driver’s license.
I became an early user of prophylaxis when I went away to college. I drove home every Friday and got infused with FFP. I then learned home infusion, so I was able to move farther away. I graduated with a degree in aerospace engineering, specializing in engine cooling and drag reduction. As they were for so many others, plasma concentrates were good news and bad news for me, as I contracted HIV and hepatitis C in the 1980s.
I couldn’t participate in team sports when I was young. I’m sure that’s why I gravitated to motor sports in adult life. After graduation, I collaborated with a top Formula One air racer and together we developed the Sharp DR 90 Nemesis airplane. In 14 months, it went from a blank sheet of paper to being the first new racer in the history of the class to win the national championship. It is, to this day, the most successful aircraft in air racing history and now sits in the Smithsonian National Air and Space Museum.
Today, I’m one of only a few hundred people in the US over 60 years old with hemophilia. I wish I could say I have some magical secret, but I think the main reason is luck. Well, luck and the fact that I have spent a lot of time understanding my disease and complications. I have good relationships with all my doctors, and I understand the importance of staying on top of my medications.
Throughout my life, without a doubt insurance has been my biggest hurdle. I’ve been self-employed most of my career, and it got harder and more expensive every year. I had to change insurance carriers three times because I hit the lifetime cap.
My life has been exciting, to say the least. I’ve been to dinner with the US Air Force Thunderbirds, lunch with race car driver Al Unser Jr.’s crew chief and flown upside down over a 1,000-foot-high mountain ridge. While I’ll be the first to admit that hemophilia helped form who I am today, none of these things happened because of it. Hemophilia shapes our lives, but it should not dominate or define them.
There may be limits to what we can do, but not to what we can accomplish. And while we’re still dealing with people who don’t understand bleeding disorders, the attitude in the community has changed considerably. There’s hope. New and more effective treatments are introduced every day, and even better things are surely just over the horizon.