As you may know or have read, I have been coined with the rare eye disease called Stargardts. I have not been diagnosed with truly having Stargardts, but the genes that cause a vision loss which are similar to Stargardts. Because of what I have learned from my doctors, they choose to go with Stargardts for now until all my genetic testing, which has been going on for 5 years now, is completely done or something pops up. In the eye of my doctors, I am a rare and special case. I love being a rarity because it means their is no one like me. But I hate being a rarity because I don’t know what may or may not happen. It’s the story of not really knowing. Everyday I wake up and my vision is stable, I smile and thank the higher power for keeping it where it’s at. I know I can wake up at any moment and my vision can plummet significantly and it’s scary. But, it’s the story of not really knowing. Sometimes I am able to relate with others, and other times I’m not.
Not really knowing bothers me a great deal. Every time I got to NIH and my ophthalmologist, I’m praying the higher power gives them a sign as to what my diagnosis is. But as for right now, I will continue to make and effort and an impact on the community to educate those around me and learn from them as well.