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• Posted: 2012-04-21 15:24:27 By Mary D
• Hi my name is Amanda and I am 30 years old. I was diagnosed with Stargardt’s when I was 18 years old. I have had bad eye sight for as long as I can remember. In December of last year during a eye exam my eye doctor thought I had RP instead of Stargardt’s or I had both. I went to the Moran Eye Center in Salt Lake City, Utah and the doctor there said it was CRD and that it was like RP and Stargardt’s on steroids. I am having a hard time with this because now I am going to lose all my sight. My vision is 20/250 in my left eye and count fingers in my right eye. Does anyone else get bad headaches? I avoid bright light as much as I can the light sensitivity is crazy. Also I was wondering if there was anyone on here from Elko, Nevada area? I am new to the area and need some friends. My email itsme0768@yahoo.com is Thank You

• CRD
• Posted: 2012-11-01 11:06:35 By Marty L
• Amanda, my name is Marty I live in utah, i just found out yesterday i have CRD. I have been legally blind since birth i was misdiagnosed many many times they settled on stargardts when i was about 6 years old. I slowly lsot vision thorugh out life. Last december i noticed quite a bit of vision loss over a short period of time. Yesterday at work for some reason i jsut couldn't see my comptuer screen and decided to go see my doctgor that i had seen and met in last december, i had heard about him and he wss a stargardts specialest who did a bunch of reserach in the UK for 20 yeras. He quickley said i dont have stargardts but wasnt' sure what i had. So yesterday when i couldn't see much of anything i went in and he saw me with out question,even being halloween he stayed from 3:00 to 7:00 calilng doctors and sending photos of my eyes and they concluded i have CRD, they kind of said th same thing as you its like stargardts and RP, now i'm very involved the blind and visually impaired ommunity here so i new wht he ws saying and was like oh crap. but in less the na year my vission went from 20/200 in my right eye and 20/400 in my left eye to 20600 in both eyes. So i am seing shadows. I just thought i would get on the FFB website and see what it had to say about it and i found your relitivly close to utah.

• Posted: 2012-11-13 16:23:30 By Samantha M
• Hi Amanda, I get really bad headaches as well. Sometimes they last for days. I currently live in Australia where it is always sunny and hot so it is definitely hard to avoid but I wear my sunglasses everywhere! In the house, outside, at night, wherever I feel I need them. Being different and doing what you need to is just part of the struggle with this disease. Good luck =)
  
  Samantha