Craig tells his own story

Narrator:

ELOCTATE antihemophilic factor recombinant FC fusion protein. Please stay tuned for important safety information at the end of this video.

Craig:

My name is Craig. I live in California. I was born in 1957 and I was diagnosed after two days with hemophilia A: severe factor VIII deficiency. It's this funny thing about growing up with a chronic disease, especially one that's visible often— is you, you sort of don't want the disorder to define you — and so you want to minimize its impact on your life.

In the early '60s they discovered this thing that was called pool concentrate and eventually cryoprecipitate, and so you had an increasingly more ability to treat and the ability to treat people as they got older, and their bodies were bigger. In the early 1980s we started hearing about hemophiliacs coming down with AIDS. So, in January of '85, I was tested positive for HIV and that caused me to change my life, but not in the way you might think. I went back to Graduate School, I got married, and I had a kid.

This is, this is what you do if you're not going to let your life be controlled by your disease. Now, I've been watching for a while and knowing that there was this product ELOCTATE, and I had researched it and I had talked to some doctors and they're very excited about it. As soon as it became available to them, we both agreed that it would be a good thing for me to try. When I started ELOCTATE, I had a conversation with my doctor. I think there were two issues that we really talked about as one would it be effective and controlling bleeds for me, and the other one was the risk of developing inhibitors on this drug. And I've been very happy with the — the bleed control. I've been very happy with how my body's responded while being on ELOCTATE.

I'm a busy guy. I'm trying to do performing. I'm trying to do writing. I'm doing some workshops and a bunch of other stuff, and my life is pretty busy. So, I'm not really good at getting up in the morning and this day every morning I'm going to treat with the meds. I really like this new app, Micro 8, which just gives me reminders and emails and so forth when I'm supposed to be treating.

I do know that there are risks associated with ELOCTATE including but not limited to headaches and general discomfort. I met my CoRe manager at a conference, a local conference for people with hemophilia. She gave me a little presentation about them, the drug that helped me understand a little bit more about it and then I think it's been good to have her as a resource.

I'm constantly moved by the way my stories affect other people, the way they touch other people. So, being an ELOCTATE Peer for me is just another avenue, another venue for me to continue to do these kinds of things that are fun for me and seemingly valuable for other people.