HD Heroes Book Chapter
Why do I want to tell my story? I want to raise awareness, and I think we have to come out of the shadows to do it. My grandmother and father were afraid to tell people they had HD. My dad was worried about losing insurance and losing his job. We have more legal protection from that now, so I feel like it’s my duty to do this.
A few people have said to me, “There’s no face of Huntington’s.” They didn’t say that I should be the face, but I felt like they were implying. That makes me uncomfortable for a couple of reasons. One, I don’t know how to be it, and two…it’s not exactly a dream come true.
This book will bring out 20 faces of HD! I like the idea that everyone should feel like an HD hero. You don’t know what you can deal with, until you’re forced to deal with it. But I wouldn’t want people to feel pressured to raise a bunch of money. Some days, just getting out of bed makes you a hero.
If you can, please help to crowd source my chapter for HD Heroes.