Family people life

Remembering the Stars in My Life With a Progressive Rare Disease

by Naomi Eby Several years ago, I was diagnosed with a rare genetic disorder. It explained health issues I was experiencing, such as difficulty controlling my weight.

It also made my family and me aware of other problems I might encounter later, including how my vision will decline, perhaps before I become an adult.

If a cure to the degeneration is not found beforehand, eventually I will become blind. So far, I have been blessed, and the deterioration has been slow, but at this point, I have lost some central vision in my left eye and most of my night vision in both.

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