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Just diagnosed with Stargardts disease..

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Old 02-23-2009, 10:57 PM   #1
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Location: Tuscaloosa, Al USA
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lilbabyphat0408 HB User
Exclamation Just diagnosed with Stargardts disease..

I'm only 23. Can anyone tell me what I can expect in the future? I keep getting different answers to the "will I go blind" question..lights bother me a lot and so does reading(which sucks cause I'm a biology major;all I do is read) I was diagnosed on the 19th of feb so I'm still kinda leery about it..if you can help that would be awesome! I just want to know what exactly this is and will I go blind one day and can I keep wearing contacts?

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Old 02-25-2009, 04:06 PM   #2
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KeelaC HB User
Re: Just diagnosed with Stargardts disease..

Sorry to hear about your diagnosis. This is an allowable site I can post:
It's informative and straightforward, and best of all, the authors say Stargardt's patients never lose their peripheral vision.

The gene has been identified, so there is hope, also, for a cure in your lifetime.

I don't have Stargardt's, but I have the same symptoms--no central vision. I've had it for ten years. It's a real bummer, particularly not driving, but it could be worse.

Contacts shouldn't be a problem.

At first, light bothered me so much I wore sunglasses indoors. You get used to it somewhat. I went to a welding supply store and got a pair of plastic welding glasses (very dark) for sunny days. I now wear yellow (or maybe it's orange) tinted sunglasses. I find they cut down on the glare but don't make things too dark.

There are low-vision specialists who can help with visual aids (I go to a low-vision optometrist). Windows has a perfectly good computer magnifier in its Accessories/Accessibility file. There are foundations for the blind in different states that can supply other useful items and advice. Closed-circuit tv viewers are wonderful if you can afford one. You can search the internet for low vision and vision aids.

Don't know if, eventually, you'll have trouble looking through a microscope.

It's important to protect your poor retinas from strong light. The article above advises wearing sun filters outdoors. I've mentioned on this forum before the possible danger to patients with compromised retinas of having a fluorescein angiogram. It involves very bright light that can harm the photoreceptors. You should discuss that with your specialist. The last time I had that test, it was done in an abbreviated form, with a timer running.

Let me know if you have more questions.

Old 02-26-2009, 09:45 AM   #3
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lilbabyphat0408 HB User
Wink Re: Just diagnosed with Stargardts disease..

Thanks so much for your reply! the website was quite helpful. I wonder if its possible that I too could just have similar symptoms and not SD..but I guess the specialist would know lol but once again thanks!

Old 02-27-2009, 10:28 AM   #4
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KeelaC HB User
Re: Just diagnosed with Stargardts disease..

Apparently, there are certain visible characteristics of the disease, as it develops. A genetic test would be conclusive too.
That being said, there are a lot of different retinal dystrophies and macular degenerations. Mine, for example, is undiagnosed. Some doctors call it cone dystrophy but say the expected signs of retinal damage are not there. Others call it retinal dystrophy and one said it could be a form of macular degeneration. No matter, they are all genetic. Of course, knowing the prognosis would be helpful.

Last edited by KeelaC; 02-27-2009 at 10:29 AM.

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