Retinitis Pigmentosa

[Night Train]

My wife and possibly at least one of my children have been diagnosed with a desease that apparently runs in the family. Can anyone explain to me what this is and what we can be doing. Or more importantly, What can we expect in the near future regarding a cure or treatment.

[chip anderson]

Go to the American Association of Opthalmology Web page. Will have info and links. Also I suspect the R-P Foundation will have a web page. I have some patients who have R-P and don't seem to have lost vision in a measurable degree over very long periods of time, but I am not an ophthalmologist. If you see an opthalmologist, see one that specializes in retinal work.

[Steve Machol]

Here's a few web address that should help:

http://www.irpa.org

http://www.brps.demon.co.uk/

http://www.rpsa.org.za/retinitis.htm

Good luck.

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OptiBoard Administrator


[This message has been edited by Steve Machol (edited 01-18-2001).]

[Tom Bowman]

Along with my other duties, I am also on the Scientific Advisory board for the Foundation Fighting Blindness (Formerly the Retinitis Pigmentosa Foundation) for Nebraska. Your first step will be to ask for the R.P. kit that they have put together that is 'jam-packed' full of valuable information.

Also ask for a list of Retinal Specialist in your area that can help you in your continued care.

You can write to:

The Foundation Fighting Blindness, Inc.
Executive Plaza 1
Suite 800
11350 McCormick Road
Hunt Valley, MD 21031-1014

Hope this helps!

Tom Bowman
Williams Consulting Group