Story about Choroideremia .

A Choroideremia story

Jun 29, 2017


Our son was diagnosed when he was 12 years old with CHOROIDEREMIA. He is now 20. Still drives and lives a normal life with it, he is in college and works a full time job. Choroideremia has still affected his eyes greatly mainly night vision. We were told he would be completely blind by the time he turns 30, but I THANK GOD for  the Choroideremia Foundation. Now that I have met others with the disease I feel there is so much more hope. 

I too am a carrier, but have not been able to find it anywhere in our family. We are having on going benefit sales trying to raise money to get him into as many study's as possible in hopes of gene therapy. If there is anything that any of you may know that we should be doing please let us know. Still at this time I feel like I don't know the questions to ask to find out all that we would like to know. Does that make since? Want to learn and do all that we can do to get to a cure. THANK ALL OF YOU FOR ALL THAT YOU DO!!!

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