Retinitis Pigmentosa

[michelek11758]

My son, 24, was recently told by his Optomitrist that he has Retinitis Pigmentosa.  We are devastated by the news.  I went to an appointment with him to pick up his new contacts and spoke with the Dr.  He showed me a picture of Ian's retina and explained that the dark spots were cause for his diagnosis.  He could not tell me how progressed this condition is.  He did however demonstrate to us how his peripherial vision has declined.  He recommended that he not drive at night anymore. He will be reffering us to a retina specialist here in the Atlanta area.
Of course I have made myself crazy over this.  Have read much on the condition itself but because I am not of the medical background, a lot of the information I have read is confusing.  They say it can often be misdiagnosed.  What tests should he be having?  They say there is no cure...........I say, NEVER say never.  What about stem cell research, supplements to slow the progression etc.?
Any info you could give would be so helpful to us.  Any specialists in this area you could recommend (no matter where they are) would be so appreciated.  Thanks for your time.

[John C Hagan III, MD, FACS, FAAO]

Please read this article carefully as it is excellent:

http://www.emedicine.com/oph/topic704.htm

Most cases of RP are not difficult to diagnosis. If there is a problem it can be diagnosed (including carrier states without manifest RP) with electrophysiological tests such as ERG.

There is no cure for RP, there are no supplements that slow its progression, light protection helps.

Contact the Retinitis Pigmentosa Foundation. I believe its in Baltimore and get on their mailing list.  Be sure other members of your family are screened for RP by an ophthalmologist.

JCH III MD

[John C Hagan III, MD, FACS, FAAO]

I agree totally about Emory, I did my ophthalmology training there.

JCH III MD

[AnnaE]

My nephew has this condition.

Try Emory University in Atlanta. They have a retinology resident program, I believe. Emory is a well respected University.

[John C Hagan III, MD, FACS, FAAO]

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[michelek11758]

We will check out Emory.  Thank you

[John C Hagan III, MD, FACS, FAAO]

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[AnnaE]

Bravo! My current retinologist studied there, too. My favorite English professor (my field) teaches there also.