> 22q13 deletion / Phelan-McDermid Syndrome > Stories

My slow decline with Stargardt.

I struggled with vision all my life. I was diagnosed with some colored blindness, near sidedness, and astigmatism. Then in 2013 cataracts was added to the mix. In 2015 I was wrongly diagnosed with having AMD and recommended I have cataracts removed and told to take AREDS2. Both no no's from what I've experienced and have been told, and read. After the extreme light sensitivity set in I sought out 2nd opinions several times before be tested and verified that I have Stargart. The low light vision specialist and the gene study Dr's have been the most helpful. Flashlights, multiple sunglasses ,a mask and my wife to drive me are constant companions when I leave the house. Even at night I must where a mask because of the headlights. I had Torc lenses put in, but the low light vision Dr says they are fine and are not causing any of the light sensitivity. I'd like any input from someone else who's had them implanted as to how you deal with the light sensitivity issue ??? Also, any other info that might be helpful for me.

Tom

 

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