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nutritional supplements
Posted: 2009-01-21 03:08:36 By Sithara N
Hi everyone,i am new to this forum.My 5 year old daughter is diagnosed to have RP about 4 months back.Someone please tell me what are the supplemets which I should give her..The doctor whom we consulted told no supplement is proven to be beneficial now and he didnt advise any.But I started giving her fish liver oil capsules and vitamin A according to the RDA(required daily allowance)for her age,which comes to 2500 IU per day.what else should be started?

Posted: 2009-01-21 12:54:55 By Darran Z
The doctor is correct. There is no strong evidence that supplements even do anything. Remember RP is a genetic disorder, not an acquired disorder due to deficiencies.

There is, however, alot of hope for current research and possibly one being on the market within a year.

Darran

Posted: 2009-01-21 20:32:51 By Ken B
Hi Darran,

Which solution might be coming out in a year? I've been skimming the research for a while and always wonder when something will come out to the general public.

Of course my hope (as with many others here I'm sure) is to see a restorative treatment before I get too old to appreeciate it. :)

Posted: 2009-01-22 13:47:30 By Darran Z
Neurotech's CNTF/ECT is going to be the likely first treatment for RP. As Luis pointed out, this will be pushed through the FDA, it likely will. But I'm a bit hesitant because othe results of what I've heard from others is not that impressive. In some people, it likely will work extremely well, but in others, it may not. This is why it's so difficult to treat RP because of the variation of genes involved that cause the disease. That's the biggest hurdle I think researchers have.

Darran

Darran
Posted: 2009-01-23 08:45:32 By Sithara N
Thank you Darran for your immediate response.What do you feel about the gene therapy which is coming up?It is proven now to be beneficial for LCA according to the recent studies.So hopefully if we idetify the gene responsible then they can do this for everyone.Any idea how the gene identification can be done?where is it done?once again thankyou for the response.

Posted: 2009-01-23 09:56:12 By Darran Z
Gene therapy is promising. But we are at the very begining stages of this. The trick, as you pointed out, is that there are genes involved and several types of genes cause RP (over a hundred). So gene therapy would have to be specific to each individual, just like a key is specific to unlock one door but not another. The process for each gene may not be the same as the other.

You can go to www.clinicaltrials.gov and see if there are any genetic or molecular studies being done. There are two commercial sites, Carver Labs in Iowa but they only test the dominant form of RP or one of them anyway. Not all of them. Then NEI is another place to look as well as contact any FFB affiliated researcher who can direct you to someone who does genetic studies. Dr. Weleber at OHSU in Portland (Oregon), Dr. Stone at the University of Iowa, Dr. Bernstein/Dr Zhang at the Unviersity of utah are a few that do this.

Darran

gene therapy
Posted: 2009-01-26 08:57:48 By Sithara N
hi Darran,
I know there are over 150 genes responsible for RP of which only 40 or 50 genes are identified.If we can identify the gene responsible then wont we be able to tackle it?They say they did gene therapy for completely blind people and they are able to read 2 to 3 lines in vision charts.Doesnt it sound promising?
What do you feel about microcurrent stimulation?people claim they are having improvement.

Posted: 2009-01-24 20:05:09 By Maria P
Shithara,
There is a group for parents of children with RP. Do you belong to it? E-mail me at mpostlewate@yahoo.com if you are interested.
Marisa

Maria
Posted: 2009-01-26 08:50:14 By Sithara N
Hi Maria,
Thanks for the information.I tried to mail you but there is some problem.It is coming as incorrect mail id.Any other mail ids you are having?

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