I was diagnosed with Stargardts in November of 2003. I am 26 years old and have a beautiful daughter and a wonderful fiance. I noticed my vision was a little “off” and decided to have my eyes checked. My doctor took a picture of the inside of my eye and noticed something, but he wasn’t quite sure what it was. He referred me to a macular specialist who did further testing and diagnosed me with Stargardts.
At first it didn’t seem real. I mean my vision wasn’t that bad. The doctor told me that it will probably take years to really affect me since I was diagnosed at such a later age then most.
It’s now almost June of 2004, and I feel just in the past couple of weeks my vision has started to get worse. I go back in August to the specialist for a check up. Sometimes I wonder if my vision getting worse is partly just in my head because I now know I have the disease and something is wrong with my eyes, or if it actually is.
My biggest problem psycholigically is nightmares. I have a reoccuring dream that I can only partially see and it’s like I’m trying to open my eyes wider, but then just won’t open any more and I can’t see. I hate that dream. I try to tell myself to wake up, but that never works.
I worry about not being able to drive my daughter to school when she starts, or to any activities she decides to get involved with. It makes me angry. I’m not depressed, because I know there are things out there that are a million times worse, and I still have my health. So I try to remind myself of that and be thankful for what I do have. I think maybe one thing that drives me crazy is the waiting game. Waiting for the moment to come when my vision is really bad, and I can’t drive, and not knowing how close or far off it is. If I had a time frame, I think I could cope better. It’s the not knowing when that gets me.
I am interested in hearing any advice or tips from anyone out there. So please feel free to e-mail me at: email@example.com.