Hi, my name is Jessica. I’m 35 years old and I was diagnosed with Coats’ Disease when I was two years old. Originally, doctors thought I had a tumor behind my eye, but upon further evaluation they determined it was Coats’ Disease. I had to undergo surgery at the age of two to reattach my retina and have a band placed around my eye to keep my pupil in place. Unfortunately, even with the reattached retina, the damage left me blind in my left eye.
At the age of 16, I had another surgery to remove a cataract that developed in my eye. The surgery was more invasive than regular cataract surgery, as my doctor wanted to see if it was possible to correct the scar tissue damage and possibly restore any vision. The cataract was remove, but it did not bring back any vision.
Today, I go for regular visits with a glaucoma specialist to ensure the pressure in both my eyes are stable and my right eye stays healthy. Being blind in one eye from the age of two was not limiting through my life. My body adapted. The only minor thing I notice is with depth perception. Objects are slightly further away than they appear to me. I have always been self conscience about my eye. After the trauma of two surgeries, it has shrunk and is noticeably smaller than my right eye. If I’m tired, the difference is more pronounced. The more rest I can get, the better it looks. I find its very evident in photos, so I always make sure to smile so they look similar.
I was diagnosed with Coat’s Disease in a time where information was very limited. No Internet, no social media. And being a rare disease, not knowing anyone else diagnosed with Coats’ Disease. I was amazed when I found the Jack McGovern Coats’ Disease Foundation. Its truly remarkable how much has changed and now I want to share my story to help others with Coats’ Disease know they are not alone. And knowing the warning signs is key to detecting and being proactive to save someone’s sight.