Hi. I'm online and happy to answer your question today.
are you available to chat?
Hi. I'm online now if you would like to chat.
I guess you are offline.
To answer your question directly. No. There is no cure.
There are, however, many subtypes of RP which can be delineated by a close examination of family history and the family tree. There are also genetic tests available for some of the subtypes.
There is no effective treatment that will completely cure RP however a study in the early 1990's showed that taking high doses of Vitamin A (about 1500 units) can slow the onset of vision loss by many years. You have to be careful taking this much Vitamin A, however as it can build up in fatty tissues.....
hi. I see you have entered the chat room.
Is this question about you or someone you know?
how can stop my eye sight from getting worse
some one I know
I am sorry to say, that other then vitamin A as discussed above, there is no way to stop the effects of RP
gene therapy /stem cell
Has this person seen a retina specialist like myself and had genetic testing and family history/tree review to try to learn what subtype they have?
That is in the very, very early stages.....not really useful yet.
retina specialist yes
ok. How old are they? 18?
is there any way to help
I see many cases or RP....the majority of my patients retain useful vision into their 30's....but some are blind by age 10. Even knowing the subtype I've found every patient is different in their progression of vision loss.
Are you interested in going to the "mecca" of RP research/treatment?
That would be Wills Eye Hospital in Philadelphia
we tried stanford hospita
but, other then doing a bunch of testing, maybe enter a research program, there will, most likely, be very little even they can do to save this persons vision in the end
RP is just one of those diseases that we are learning more and more about every day but we're not able to fix yet.
Is this person your child?
As a parent myself I can't imagine what you are going through. I wish I could bring better news but after almost 2 decades of doing retina RP is one of those diseases that I hate to give as a diagnosis....
my only son
how fast is he loosing vision?
they gave us the diagnosis 2010..I do not know
have you read the wikipedia page on rp?
ok....he could have decades of useful vision ahead of him, depending on his subtype and his personal disease course.
here is the link:
Where are you located in the US?
University of California, San Francisico also has an excellent Retina department. I know a couple of the guys there and they would be able to do all the genetic workup and special testing
can you give me names pleas4e
Jacque Duncan, MD has a special interest in retinal degenerations. I also know Dan Schwartz, MD does retina but I'm not sure if he does RP in particular
They also have a couple of PhDs who focus on the retina but I don't know them....
Hey. I just went to their web site and they are enrolling patients right now in an observational study concerning RP. That might be just what you are looking for.
how far are you from SF?
here is the link
Give them a call....
I will thank so much
my pleasure. I will hope for the best for your son. Thanks for giving me a chance to assist you.
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