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for the Blind

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What's Next

I am 54 and recently diagnosed with adult onset vitelliform macular dystrophy. For a year now my doctor had been treating me for macular degeneration and I was getting Avastin injections in both eyes which I did not respond to, meaning my vision nether improved or got worse. I am 20/30 with glasses. I am seeing the wavy lines, distortions and very dark gray faces and sometimes no faces in very poor lighting. I am still able to drive day or night and can read. However, I am afraid that at anytime I can get worse. I am very greatful that my vision is what it is now and I am now very concerned that I have past this on to one of my 3 children although none of them seem to be affected at this point and they are 29,24, and 22 years old. My mother also had this disease and she also passed away from breast cancer. My question is what's next..Will my vision stay the same for awhile or will it quickly deteriorate? It started in only one eye and then within a few months It was both.

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Re:What's Next

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Re:What's Next

Vitelliform macular dystrophy is carried throughout my family. I have been tested and do NOT have it, but my brother does. So does my mother, as did my maternal grandmother. Although my grandmother's vision was reduced to the point that reading and seeing detail became difficult later in life, she was perhaps the least affected by Best's Disease. My mother is legally blind, cannot drive, and listens to audiobooks -- she is in her early 60s. My brother, in his 40s, still drives but is having difficulty making out details in people's faces, etc. Neither have yet to try the Avastin injections combined with photodynamic therapy to treat the secondary symptoms (edema in the macula and fluid build-up) resulting from damage to the macula. Some individuals report imrovement in their vision, so it will be interesting to follow the results of this line of treatment. Best's Disease normally manifests much earlier in my family than adulthood, so individuals experience loss of visual acuity much sooner with continued worsening throughout adulthood. I'll let you know if either my brother or mother move forward with the Avastin/photodynamic therapy and note improvements.

Re:What's Next

hi. i never heard of this before so i googled it. from the looks of the articles i saw, it seems your eyesight will digress at the same pace since the onset of this disease. it's nothing that would all the sudden leave you without your central vision without time to prepare and adapt. Nor does it effect the peripheral vision from what i've read.
here is a link to one site in particular i found useful. Best of luck to you.

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