LIVING WITH STARGARDTS DISEASE

Michelle's Story

I am 29 years old and have recently been diagnosed with Stargardts disease

My vision has been fluctuating for the past eight years. I would go from doctor to doctor and leave without a diagnosis, just a prescription for progressive bifocal lenses. Thank God for them, since they look like regular glasses. Somedays I needed them, somedays I did not, but I always carried them with me since I never knew what my eyes were going to be like on a particular day. These last two years, my vision has become quite an annoyance and my progressive lenses do not work as well. When driving, I can't read street names until after I pass them and I always need to drive with my visor down to help block out the glare(I have been doing that for quite a while but now it makes sense why) When snow is on the ground the glare can be blinding.

I was playing Trivial Pursuit with friends with my glasses on and that was the night I realized I might be colored blind. I would read the question in the green category and my friends would say Michele you need to read the blue question. To me the green was blue. The same would happen for the pink and orange questions.I was quite bewildered.

I sought out a new doctor and he diagnosed me with cone dystrophy. There's nothing we can do for you, just live your life fully, but be prepared to lose your license and register with the Foundation for Fighting Blindness. I was shocked and very frightened. Two months prior I got separated from husband and we are in the process of a divorce, and now I'm going blind?

I sought a second opinion at the Scheie Eye Institute and that is when I was diagnosed with Stargardts. I am enrolled in the Center for Hereditary and Retinal Diseases program and am on the waiting list to be seen. But the scariest , is that there is no treatment and no time frame on how much longer I will have my vision.

I am a RN and am currently working and still driving my car. I try not to think about this condition I have because when I do I get upset and frightened of what kind of future I might or might not have. I live each day thanking God I can still see the sky and watch the bids fly , but as for my future vision only God knows so I place my faith and trust in him.

If you want to talk, you can reach me at lagrossas@aol.com

Michelle

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