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Chuck from Upstate NY

Chuck’s story

Hi, I’m Chuck from upstate NY and I’m in my late 20s. I was diagnosed with Stargardts a little over a year ago but have noticed changes in my eyes for the last 7 years. As of right now, I see some blind spots and it’s best described as a donut: I can see in the middle and on the outside.

All the doctors I have seen haven’t given me any treatment plan to pursue, and obviously not a cure, and this is very frustrating. My Dad found these vitamins “Premier Formula for Ocular Nutrition” and I took them for a while, but I was then told there is too much Vitamin A in them, which may explain why I felt tired when I took them. So now instead of taking 4 a day (which among other vitamins, contained 25,000 IU in Vitamin A), I now take 1 pill. My doctor said that for long-term dosages, Vitamin A should not exceed 9,300 IU daily. (50,000 IU is okay for short-term dosages)

My wife and I have read about The Santa Fe Protocol: and sent away for the dvd which said the treatment has worked for people with Stargardts. We haven’t contacted them yet, as we are unsure what path to follow. We have heard about Dr. Nolan through this website, although I read some negative things about him today: forum at Foundation Fighting Blindness

I also saw an occupational therapist but at this point in time it was mostly advice on what to do in the future. I am still able to drive and still able to work as a Computer Programmer. I find that light bothers my eyes, and darkness is actually better. Thus, it’s easier to drive at night and it’s better to have the lights above my cubicle at work dimmed. My wife and I are curious if others have similar issues with light? The occupational therapist seemed surprised.

It is uneasy not knowing what will happen, since Stargardts doesn’t have a natural path. My doctors keep telling me that I am young to have Stargardts and that maybe it won’t progress until later, but this website is full of stories about young people with Stargardts. It is frustrating how little doctors seem to know about Stargardts. My primary doctor and even the occupational therapist didn’t even have reading material ready to give to me.

Any advice or discussions would be most appreciated: