Caroline’s story

I am a 40 year old “housewife” with two children and great husband. I first discovered I had this condition when I was 33 and had just had my second child. I had only worn mild prescription glasses since my mid- twenties to see and read better far away, but no major problems (I didn’t even wear my glasses – hardly ever)! I went for an eye exam because I was having light flashes which I was told had nothing to do with my eyes but were an aura to migraine headaches.

However, a different problem was discovered and I was sent to the retina specialist in Dallas. This was the first time I saw my blind spot and only in the low light trying to read letters. My normal vision had no noticable impairment. The Texas Retina Associates did not name my condition at that time. They diagnosed me with vitillaeform (spelling?) lesions that may or may not get worse. I was told to be re-examined yearly though there was no cure.

My vision continued fine for the next 7 years, so I didn’t go back to the specialist – too busy! Then, this past December, at 39 years old, my vision made a seemingly sudden change. One day I looked down at a paper with regular typed print and it looked all smudged and the lines or sentences were wavy and moved around! This continued and my distant vision grew worse . Also I began to see my blind spot; letters or areas I tried to focus on were completely blocked out. So I finally went back to the retina specialist.

Now my disease has a name and here I am learning more on the internet! I thought I was the only one with this! The retina specialist gave me information about a free genetics research place that would be interested in studying my eyes. I understand that perhaps my children could have this (no problems so far – ages 13 and 6). Anyway, I feel hopeful and so much more informed.

I thought reading and even driving were going to be history for the lizard woman – not anymore! Good luck to everyone out there!