Meet Christopher

Back to Profile Index

^{A snapshot of Fabry disease…}

“I am 18, and my major symptoms are pains in my toes, and pretty bad pains in my chest. It’s different every day. I have a definite problem with heat. If I can’t stand the heat, I have to be in someplace cold or else I get heat exhaustion easily. I throw up every day, and I have diarrhea sometimes if I don’t eat properly.”

^{Early experiences…}

“When I was young, I would have diarrhea once in a while, and the doctors just assumed that it was lactose intolerance. I also had problems with heat as a child. I was told it was all in my head, or lactose intolerance. That was when I was about 4.”

^{Coping with Fabry disease…}

“I’m accustomed to making decisions about going out, going to certain places. You know, don’t go out if it’s too hot; don’t go for a run if it’s 90 degrees out, and so on. Sports are definitely a lot more difficult. I used to run cross-country, but being out and running, or playing football, is a lot more difficult because of my sensitivity to heat.”

^{Reaching out…}

“I’ve talked about the disease to a couple of my really good friends, because they cover for me sometimes when I have to leave or do something. And they’ve been really good about that.”

^{Advice for others…}

“I try not to think about it too much, even though it’s always there. I’d say the best thing you can do is not worry about it.”

Back to Profile Index