***I know that it took us a long time to find out that glasses that could help even existed. So if anyone with Stargardt's, macular degeneration, or low vision has any questions about our experience with these devices, contact me and once her appointment is done, I will convey any feedback she has to you.***
My sister, Briana, has been struggling with the worsening effects of Stargardt's disease, a genetic form of macular degeneration, since she was 11 years old. She is now 33. That is 22 years of an oncoming near-blindness eating at her eyes. On top of this, she had a brain tumor that nearly took away her peripheral vision before it was finally surgically removed. While Stargardt's usually does not cause complete blindness, if the tumor returns, she is at risk.
She cannot drive. Finding work is difficult, and she is a single mother to a 14 year old son. Her son must often read things to her because she can't see it. She is afraid of crossing streets. On an amsler grid, a plain grid of perpendicular lines, she sees a heart shape because blind spots have distorted the image she is able to see. Normally, our brains fill in these blind spots, letting us interpret the image we are seeing, but her disease has progressed so that her blind spots are so many and so large that her brain can no longer fill them in. Her view of the world is a picture that is constantly being punched with holes and she can't stop it.
However, through all this, she has stayed strong. She holds onto hope that one day she will be able to regain some of her vision, even though there is no cure for Stargardt's, and she does what she can to cope.
But finally, some of our hopes have paid off. While there are no physical treatments, Dr. Azman from the Low Vision Specialists of Maryland and Virginia has telescopic glasses that use small bits of remaining vision and specific measurements to help patients that have suffered from Stargardt's. The glasses that she have chosen cost $5,900, as well as an electronic device called E-Sight with a price of $15,000. Her exam to be fitted for the glasses will cost $495. Although her vision won't be 20/20 even with these devices, she will be able to have a little piece of her life and her independence back. It would also take a lot of pressure off of her son who is responsible for helping her in so many tasks.
Because her deteriorating vision makes it difficult to find work, she has a hard time saving money. So this is my way of asking for some help to get the two devices. I want to give her a reason to keep smiling.
Thank you to anyone who can contribute. It means more than you know.
More information on Stargardt's : https://www.macular.org/stargardt-disease
Information on devices by Dr. Azman and other nearby Low Vision Specialists: www.lowvisionmd.org
Her chance to try out E-Sight:
WBAL's coverage on her story: http://www.wbaltv.com/news/technology-helps-visually-impaired-to-see/32820326
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