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 [...]