For eight years of my life, I was a happy and healthy child who had the entire world at his fingertips. I played several sports, enjoyed art and music, loved video games, and overall had innate talent in many activities. All of that changed on one cool autumn day.

I went for my regular annual checkup at the doctor’s, and when they administered a vision test I was shocked to notice that when I closed my dominant (left) eye, there were dark spots in my right eye’s vision. I’d never had such an issue before and my mother and doctor had trouble understanding what I was describing. Soon enough, I was diagnosed with Coats’ Disease by an ophthalmologist. Initially, I took the news pretty well. As far as I knew, I could still see very well, and since it was caught early, there was a very high chance that surgery would keep it that way. But my parents never stopped worrying about me. They constantly reminded me that protecting my dominant eye was the most important thing in my life. I had to start wearing rec specs even though I thought they looked ridiculous; other kids ridiculed me, it was harder to play sports with limited peripheral vision, and reality started to set in. I didn’t want anyone to make excuses for me but I slowly but surely recognized that my dreams of being a pro soccer player were probably never going to happen. My depth perception has become terrible and it’s hard to have a wide view of the field.

Despite the challenges, I kept trying to play until I was 14 but things never got better. I couldn’t improve anymore and nobody seemed to believe in me. Coats’ Disease is not only a debilitating visual setback; it’s also terrible for your mental health. Originally I thought it was cool that I had something others didn’t even if it was a disadvantage. But over time those naïve feelings of being “special” evolved into resentment. “Why did the world choose ME to get this extremely rare condition?” “What did I do to deserve this?” It affects 0.09/100,000 people in the US and OF COURSE IT HAD TO BE ME. Thoughts like this frequently cross my mind. And the worst part is, every year I have to go to an eye doctor and check to see that my retina hasn’t detached, that there’s no ocular inflammation reappearing, etc. It scares me to think that even though I’m fine now there’s a chance that one day the cryotherapy and laser will stop working and I won’t be able to see my future friends or partners, or the beautiful world around me. Until that time comes, I just need to keep moving forward.

I’m now 18 years of age and in my first year of university. I hope to graduate with a bachelors degree in Political Science and go to law school afterwards. While my vision will never be the same, I still have my mind’s eye. I know that the gift of life trumps any tradeoffs that will happen after. I just need to keep playing my cards right and work with what I have. I believe all of us with Coats’ Disease still have amazing potential. We are a rare group of people and many of us probably don’t know a single other person with the condition. I hope one day I find someone I can relate to. If not, I hope that my story and what I’ve learned can help one of us in the future. This disease is terrible and needs more attention. The Jack McGovern Coats Disease Foundation gives me hope that one day enough research can be done to improve treatment and possibly even find a real cure.