Hello everyone, I created a data file with the purpose that one can maybe find someone suffering from the same deseas who lives near oneself. There might be a ...
Hi just thought I'd send you a note. I have RP and have had it since my early 20s, I'm now 47. My side vision is pretty well gone and I have floaters all...
Dear Sir, Â I am a RP patient. Does Vitamin E intake retards the effect of Vitamin A . I am having hair fall so I wanted to take Vitamin E but I was suggested...
The question is more how much vit E. I remember FFB studies alerting against Vit E for RP patient. I do not remember any interference with Vit A. I remember...
I have Ushers Syndrome. It was recommended that I take 15,000 IU of Vitamin A. I take a multivitamin and take an extra supplement of Vitamin A to add up to...
There is negative -I read- with carotene Vit A. I am getting the 15000 IU of Vit A Palmitate from Carlson. In fact when I got diagnosed 15 Y ago Carlson were...
In my 30's I had cataracts removed from both eyes. I have RP, diagnosed at 9 months old. I am in my 40's now. Removing that film ( I was rubbing my eyes all...
Vitamin A and E are your fat vitamins, so they compete with one another. Take them at different times but not together. Too much Vitamin A will cause hair...
Hi Countess, Interesting your doctor is now mine starting next week when I have an appointment with him..:)? What can you tell me about him and what is his...
I think if you take a regular multivitamin (which you should), you'll get enough E. I wouldn't add any additional e. Also, the study showed that the benefit of...
I'd rather keep my vision. I've had hearing loss all my life and adapted to it.. losing the eyesight is much harder for me. Of course it could just because I...
Is your sister older? Was the degeneration already further along when she started the vit A regimen? My ret specialist said that if I had family that had RP I...
yes we both were diagnosed in the early 80 ies....My sister is ten years older.. Her vision degenerated quickly after taking the vita a regime, My central...
Michelle, p.s. My sister who is 10 years older and I were diagnosed w rp... we both barely met the criteria that define what is legally blind.... When all...
My sister and I both have rpand were taking vitamin A.She is 50 and I'm 61 she is totally blind and I;m 97 percent so Idon't know about the vitamin Athing ...
I'm a 49 yrs old male with Usher Syndrome and RP since birth. I have less than 3 degree of peripheral vision. I used to take Vitamin A back in the 80ies when...
so your theory is that it's different for ushers than for an rp patient. That's an interesting idea. I do not know if I have Ushers. I have mod/sev hearing...
Correction 2005 is when I was diagnosed.. so it's only been 3 years.. I went looking for answers in 2001 and got nowhere.. the ophthalmologist thought my case...
Just a note to anyone in the Pittsburgh Area. The Foundation Fighting Blindness is coming to Pittsburgh and we are trying to walk to raise $50,000.00 dollars...
Hi all I have been following this thread with interest I live in the UK and I
have Usher 2 My doctors all say that if you eat a balanced diet you do not need...
Hello, I was told by a doctor at Northwestern last year you are wasting you time on Vit A palmitate and it has not proven to help.? He was part of the study? I...
My father took vitamin A for years, still he got blind. I guess that there is no effect and i would not risk my health (leaver) on taking vitamins just hoping...
He's a very good doctor, IMO, but he kinda lacks on the "bedside" manner. If you have questions for him, be sure you have them written down on pad and leave...
IMO, there are no clearer answers when it comes to RP. I've been taking Vitamin E since the mid 70's and don't feel that it's done harm at all. It would be...
Good luck on the Vision Walk, Cindy. I've yet been able to attend our first two here in the Phoenix area; had a busted ankle this year! Countess In a message...
Thanks Countess .. will have my list ready.. He came recommended by Dr. Jampol who I cannot see because of my insurance. So glad to hear he is a good doc and...
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