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tan253's avatar

Anyone here have Stargardts?

Asked by tan253 (2958points) July 27th, 2016

Hi All,
Anyone here have Stargardts disease?
I’m wondering if anyone suffers from quite debilitating symptoms?
Pressure behind the eyes, painful eyes, weird pins and needles down your nose due to pressure. My sister has this disease and has since she was 12, she’s not 40. She has this intense pressure behind her eyes and she feels she need to press her hands on her eyes to release the pressure. She’s been to see the eye Dr and they can’t see any inflammation and they say her eyes look fine, but she says her vision is much worse and now she can hardly see at her. Her Dr had given her antibiotics just in case of a sinus infection but they did nothing and the pain and pressure is still as bad. Any thoughts? She’s going to the Dr again tomorrow and another eye doctor for a second infection. I’m wondering if this is common with this eye disease?

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3 Answers

jca's avatar

The sister of a friend of mine has it. She’s in her late 30’s now. She can’t drive but she can see well enough that she gets around without anyone knowing she’s legally blind. She told me once she identifies people by their coat color, shape of their hair, etc. As far as her physical symptoms, I don’t know what she has experienced. She has kids, she used to work in the city. That meant subway or train – I had to give her credit for doing all that. Many people wouldn’t have been able or wouldn’t have wanted to do that (healthy people don’t want to do that often if they don’t have to).

tan253's avatar

Hi @jca – my sister is the same! She’s lived in Singapore, Australia, and travelled America with her family and you’d have no idea. Trouble is is that it’s getting worse and now she can’t really see at all… very scary for her. Hopefully the Dr’s have some answers, so far they haven’t.

Kardamom's avatar

I had never heard of this disease before today. It sounds like the only hope at this time is to get vision aids to help her to lead a more normal life.

Here is information about Stargardts for those who may not be familiar with the disorder.

Best of luck to you and your sister.

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