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Amy from Henderson, Kentucky

Amy’s Story

My name is Amy. I am 24 years old. The doctors first discovered that I had Stargardts because my older brother was first diagnosed. We both went to the Lions Eye Institute for more extensive tests. He was 13 and I was 10 back then. Our family eye doctor had noticed yellow patches when he did my brother’s exam and that’s what led us to the institute. He was diagnosed on the spot and my parents were told that I was in the early stages.

I really didn’t have any dramatic effects until I was about 16. That’s when my eyesight began to go. My brother was legally blind by the time he was 19. For some reason his progressed much faster than mine did. So far I’ve been lucky. I still have relativey good vision, for someone with Stargardts that is. I see about 20/200. It makes life hard, but not nearly as ihard as it does for my brother.

We don’t know anyone else who has this disease. Although it has hindered both of us, it hasn’t stopped either one of us from living our lives. He is maried with two beautiful little girls, Ashley 5 and Sarah who will be 1 in June. I am currently in college working on my last year and a half before I can begin my career as a teacher. It’s been a rough road and I don’t expect it to get any easier, but as strange as it sounds I don’t think I would change the past. I feel like this experience has been a big part of who I am. I don’t think I would be as strong and determined if I hadn’t had to go through this. On the other hand I would wipe it away for bothof us in an instant if they developed a treatment. I think that we, and anyone else who has this disease, have dealt with it quite long enouh.

I look forward to talking to others on this site who have also had their lives dramatically changed by Stargardts. It will be nice to have others to relate to for a change.