Story about Retinitis pigmentosa .

My RP

Mar 3, 2016

By: Sara


I was diagnosed with autosomal dominant Retinitis Pigmentosa when I was 14. I inherited it from my dad. I was declared legally blind (less than 20 degrees of vision) when I was 20. I am currently 28, and I have 5 degrees left. I also have cystoid macular edema, cataracts, and common astigmatism. I hid my disease until I was approximately 24; I did not want to be judged or labeled the blind girl, or have to answer questions, particularly about being blind and wearing glasses. I am now very open about it, and actually wish more people would ask questions, rather than assuming anything. I try to spread awareness about RP, particularly the concept of being partially sighted, as so many people don't understand that blindness falls on a spectrum. I started using my cane when alone in public last year, which is sometimes still hard for me, but I have learned what an amazing tool it can be. I am active in many online RP support groups, and am happy to be able to help others i figure out how to cope with their condition. I hope I can help others, whether they need to talk, rant, cry, or just have questions. 

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