Psychologically Coping With Loss of Vision

by Kiah
(Arizona, USA)

Hi, I was diagnosed with the eye disease Retinitis Pigmentosa at age 8. The doctors say that I have give or take 7 years before I will become legally blind. There is no treatment or cure.

I have learned as much as I can about the disease itself. But I am having a hard time finding any sources of information that explore the relation of psychological impact and issues that may arise with the loss of a sense, specifically vision.

I want to find some books that explain and analyze how to emotionally cope with this. Any sort of practical examples of how other people were able to learn how to cope with the loss of vision, would be really helpful.

I know its really specific, and I don't expect there to be much of anything. all I can find so far is how to rehabilitate physically (i.e how to use a cane or guide dog, learning braille, computer programs, transportation etc.) I don't need help with those, just with the psychological impact side.

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Sep 21, 2010
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From a fellow RPer
by: Vicki

I can't tell you of studies that have been done since I know of none but what I can tell you, as someone who was diagnosed with RP at the age of 9 and who is now 50 & legally blind by state definition, (less than 20 degrees of visual field though I still have usuable central vision), that the best way to learn how to cope is to talk to those who are doing it.

There are many wonderful groups, mailing lists & web sites out there that will connect you to those of us who can guide you through the trials & tribulations as well as the smiles you'll have to find to keep you moving forward through this.

Let me set you in at least one helpful direction.

http://groups.yahoo.com/group/RP-Friends/

Look for a member named Dan Huhn in particular.

I do hope this helps.

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