What can I do to combat Retinitis pigmentosa?

Question

My sister has it. She was diagnosed with it at an early age, and it's something that my family doesn't like to talk about, because they pretty much think it's hopeless. It worries me that she isn't taking any steps to prevent her blindness, and I've read various random articles about vitamin A, but I don't really know what the best way to go about treatment is. Does anyone have any advice for me? I'll take whatever you've got, from carrots - to expensive experimental procedures. Just give me something. Also, do individuals with RP usually go completely blind or just legally blind? Because if I knew that her vision would be at higher than 0% I would be considerably less stressed. I know RP varies a lot from case to case, but just give me some general info and I'll go from there.

Answer 1

You are right...Retinis pigmentosa does vary from person to person. Many sufferers of RP are not legally blind until well into their 40s and 50s. Some sufferers retain some sight all their life, while others lose all their sight in early life.

Vitamin A has shown to greatly postpone the progression of blindness, and in some cases has postponed blindness up to ten years.

In addition to Vitamin A, your sister should make sure she wears sunglasses to shield her eyes from the sun. Exposure to sunlight is never good for anyone's eyes, but it is especially unsafe for those suffering from RP.

Don't give up hope for your sister. While there is no present cure for RP, there is a  great possibility for a cure in the future. Retinal transplants, artificial retinal transplants, and stem cells are a few of the possibilities for a cure.  

Your family might not like talking about it, but it is something they need to talk about. Retinitis pigmentosa is not something you can ignore.

While you should remain optimistic for a cure, don't rely on it. Be realistic also. I know that this is a hard thing to accept...believe me...but try to make peace and accept the fact that your sister will more than likely lose at least some of her sight. It could be years before she loses her sight, and there may be a cure in the near future. She may never lose all of her sight. I'm not trying to upset you, but I want you to be realistic so you know that she could lose some sight or all of her sight. It's impossible to predict.

However, if your sister is one of the suffers of RP who loses most of their sight, then encourage her to join a support group. She could learn Braille, and she could take classes at Hadley School for the Blind.

It is important to remain optimistic for her and for yourself.

If you would like more information...or just someone to talk to...feel free to email me. I don't give my email out in public, but I would send it to you in a message and I would be glad to help with any concerns you have.

Take care.