Mitigating Hemophilia's Impact on Life
Tags: Hemophilia,peer exchange,SPT
After discussing the impact hemophilia can have on one’s life, Doris V. Quon, MD, and patient Eric Mamos discuss potential ways to mitigate this impact and live a healthy life.
Doris V. Quon, MD: Eric, we’ve discussed how hemophilia affected your life early on. How is it affecting your life now that you’re an adult? What impact does living with hemophilia have?
Eric Mamos: I’m told that hemophiliacs are certainly more prone to, or can have, strokes. We have a whole work-from-home program at work, but I’m the guy that doesn’t work from home. I come in 5 days a week. If I have meetings, I leave my door open because I’m paranoid. I’ve become a little bit paranoid, even though I’m on better medication and I know all these things. That’s all great, but logic goes out the window when you think that there’s a possibility. I’ll just go into work.
Doris V. Quon, MD: Have there been any other treatments that are nonfactor or nonpharmacological therapies that you are involved with that would treat your hemophilia or make your life easier? Physical therapy? There’s a lot of pain associated with having hemophilia and joint bleeds. How did you manage those things?
Eric Mamos: I think that I’m blessed to have the genes of my dad. My dad has an extremely high tolerance for pain. I think I took after him. The pain has always been there, but I can deal with it. I try to avoid taking things like Advil and Tylenol if I don’t need to or if I can avoid it. I never really did a lot of pain management. In terms of physical therapy, I was active and thin—if that’s possible to believe—before the ITP [idiopathic thrombocytopenic purpura], actually.
Doris V. Quon, MD: Yes, I did that to you.
Eric Mamos: That ITP killed me. I think I gained 50 pounds, something like that, from the treatment. It’s never gone away.
Doris V. Quon, MD: Yes. When Eric had idiopathic thrombocytopenia purpura, now called immune thrombocytopenia purpura—a low platelet count—I had to put him on steroids, which is the common treatment for this disorder. He gained weight from that.
Eric Mamos: Yes. And I pay that price today, actually. I’ve never been able to lose that weight and it’s been very difficult, so it’s a new aspect. At my last doctor’s appointment, my doctor looked at me square in the eyes and said, “Eric, seriously, you’ve got to lose some weight because the last thing you need is to become diabetic, too.”
Doris V. Quon, MD: Yes, I understand, you have enough comorbidities without extra comorbidities. With aging in hemophilia patients, we’ve actually seen a lot of comorbidities, including diabetes, high blood pressure, and even cardiac disease. It’s something to be concerned about.