G Shellye Horowitz, a hemophilia patient advocate, explains how switching from on-demand treatment to prophylaxis helped her stay active and prevent repeated bleeds. Read her column, “The Forgotten Factor.”
Transcript
I did have a care team once that I feel was too comfortable with this idea of “good enough,” and it actually had to do with my exercise and the plans I wanted.
And at the time I was receiving on-demand treatment — which means that you get treatment if you have a bleed. Many people with mild bleeding disorders are on that, and it works really well. Because of my active lifestyle, it wasn’t.
So I was in a situation where I would hop on my bike. I was riding at the time, 20 to 25 miles a day. And I would end up hurting my knee, and then my treatment center would say, “Oh, you need to stay off it, so don’t exercise for 1 to 2 weeks.”
And then I would do that. I would heal and I would also take factor, and then I’d hop back on my bike. And then a week or two later I would injure it again.
And I just said, “This is not working. I am off my bike more than I’m on it.”
I switched centers and they put me on prophylaxis — which is an opportunity to prevent bleeds as opposed to treating them when they happen. And almost immediately it changed my life, in that it allowed me to continue to exercise without getting hurt so often.
