Blindness & Visual Impairment Support Group

Well I have not heard of anything to help treat RP. It is scary for her and I am sure yourself. Has your daughter ever worked with the commission for the blind in your state? If not she should try and get services. They can help her become more aware of her surroundings and become independent even more that what she is.
I, myself and legally blind and have been since birth. I use to have enough vision to drive but that lasted only a few years. Now I use a cane and am pretty independent. It is never easy to lose vision. But with the help of you she will be fine. Your welcome to message me anytime you need to talk or anything else. Have a great day.

Hi SkyEagle,

I also have RP, I am 39 and drove until last year. Although, I wasn't diagnosed until 33 I had night vision problems back in my teens. RP is generally very slow in it's progression. I believe my vision deterioration increases rapidly with stress. So, I try to keep things simple.

As far as treatment there is nothing as of yet. Some RP'ers take high doses of Vit A 1500iu/day. Every doctor I have talked to has given me the same opinion; there is no scientific evidence that it slows RP, but it will damage your liver and kidneys. So, I have stayed away from the VIT A and just try to eat healthy.

There are some incredible studies going on right now. Specifically "Gene replacement therapy", it has done wonders for people with LCA which causes children to go blind at an early age. It shares the same gene mutation as RP and I believe they are in the second phase of studies. So far, all patients in the study have had vision restored and they were previously totally blind.

Dr Stephen Rose spoke at an FFB meeting recently, and said he believes it will be available in 4-5 years.

Get involved with the Foundation Fighting Blindness in your area. It has been helpful for me to meet others with low vision, scary at first, but encouraging and wonderful once I became involved!