Thriving with Hemophilia

ANDY MATTHEWS AND David Ohlson are both married with young children. They share a passion for giving back and speaking out for causes they believe in. And they are considered a rarity within the medical community: They are active, athletic men in their early 40s living with severe hemophilia.

Diagnosed as infants, Andy, 43, and David, 44, have a unique perspective when it comes to cataloging the evolution of care for this rare bleeding disorder. Three decades ago, hemophilia homecare was nonexistent and life expectancy for many patients did not exceed adolescence, even before the HIV/AIDS transfusion catastrophe of the 1980s. Thanks to medical breakthroughs and prophylactic care, prospects for today’s hemophilia patients are much better. But Andy and David recall a time when routine events like family vacations had the potential to turn into life-threatening situations. Andy remembers needing to travel with cryoprecipitate (a concentrated form of plasma) stored in dry ice just in case he needed a transfusion on the road. At hotels, and later at college,Andy’s plasma had to be stored in a restaurant deep freezer. David’s experiences growing up were no less challenging.

“When I was 8, we were preparing for a Disneyland vacation. While jumping on my bed in excitement, I smacked my knee on the headboard,” he says. “I didn’t tell my parents right away, but two hours into the trip it was obvious I was in real trouble.”

Instead of spending a week at Disneyland, David spent the week in a Los Angeles hospital. “The final two days of our trip, we went to Disneyland with me in a wheelchair. The good news was we got bumped to the front of each line, so there’s always a bright side!” he laughs.

The ability to look on the bright side is a characteristic David and Andy share, and is at least part of the reason the two friends now oversee a website and blog reaching out to the hemophilia community. Their site, titled Sweet Affliction, offers educational content, resources and a platform for people to share their own stories, struggles and victories.

“Hemophilia can be a very difficult disease to manage, but it has given us a different perspective on life that we would otherwise never have experienced,” Andy says. “I call this our ‘sweet affliction,’ because if you look at it as a blessing rather than a curse, your whole point of view changes.”

Health insurance is obviously a big concern for anyone living with a chronic disease. While Andy was able to remain under a form of his mother’s policy, known as a conversion policy, for many years into adulthood, he advocates that younger patients become highly educated about various insurance loopholes and care restrictions. He also encourages young patients to pursue higher education to improve their future insurance coverage options.

“The world of insurance is changing, and insurance companies are moving into the business of hemophilia management,” Andy says. “It can feel like learning a foreign language. But once you know what the language means, you can handle it.”

“Insurance and access to treatment are always issues,” David explains. “It’s important for those living with this disease to push for standards-of-care legislation and advocate for increased lifetime insurance caps.”

While public advocacy is important and can provide a sense of purpose and accomplishment, David is also quick to note it’s vital for anyone facing life with hemophilia to maintain a positive attitude and set personal goals. “Maybe you can’t be a major league baseball player but you can excel academically or creatively. The key is to look at what you’ve been given and see how you can make a difference.”

David has served as board president for the Utah Hemophilia Foundation for the past three years, a position he says he has been privileged to hold. Andy has been actively involved in the hemophilia community for more than 18 years, and currently speaks publicly on insurance issues and motivating young people to pursue education beyond a high school diploma. To learn more about their mission or to post a story, visit www.sweetaffliction.com.