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• RP
• Posted: 2008-10-13 18:32:26 By kimberly s
• My 14 year old son was just diagnosed with RP, can anyone tell me if there is a cure or any treatments he could take, we just found out this past thursday. thank you

• Posted: 2008-10-17 16:39:09 By Darran Z
• Kimberly,
  
  My name is Darran. I have had RP since I was a little boy. RP has no cure. There are alot of clinical trials going on. YOu can look here on this site or go to www.clinicaltrials.gov and search for retinitis pigmentosa.
  
  There is some mediocre studies and contreversial studies that suggest Vitamin A palmitate "MAY" slow down RP. The problem here is that RP is a genetic issue and many gene mutations are known (one-hundred or so) known to cause RP. Each mutation has a different mechanism. RP does progress slowly, in most cases.
  
  If you read into anythin of a "cure" to RP, it's a hoax. You can search pubmed.gov for trial information and what kind of studies have been done but not show any progress.
  
  I'm not a fan of the Vitamin A approach for several reasons, this is quite contreversial at best. Several FFB doctors even argue this. So your answer will depend upone who you have talked to and their background. You'll notice those who are familiar with genetics and are both boaard certified in genetics and ophthalmology have one opinion and the others have another opinion. But if it makes you feel better to do something than nothing, then be cautious and talk to your child's ophthalmologist about the Vitamin A. They would have to do liver baseline tests because of toxicity is possible from the high dosage of Vitamin A.
  
  Darran

• Posted: 2008-10-20 00:31:03 By Margaret M
• Hello,
  My son was diagnosed last year at this time when he was 15. It was a complete shock. He has had a lot of medical issues since birth and we adopted him at age 2 1/2 yr. We have no family history so we have nothing to go on. While I was sure it was the end of the world it hasn't been. Yes, he is very mad that he can't drive and that his future is not quite what we thought it would be but so far we are all coping - some days better than others. He gets some help in school but he still has good central vision - just nothing to the sides at all. He has trouble in low light and in bright sunlight. He has good sunglasses and glasses for school that have an anti-glare coating which helps a little with the overhead projectors in class. He uses some large print books and a few books on tape for English but that is just to help him from getting fatigued. We do have him take Vit A and Lutein and DHA - but it is because I don't think in the dosage he has it will hurt and if it helps a little then it is good.
  
  By May of this year we were exhausted from trying to figure everything out and not seeing much help soon. Just the doctor appts can wear you completel out. There are some interesting clinical trials but they are still a long way off from being offered as a treatment. So we decided to follow the "Laughter is the Best Medicine" approach. We got a puppy in early June - a labra-doodle. She is a labrador / poodle and doesn't shed, is very happy, funny dog and won't get too bigh. She has brought a lot of laughter and smiles into our family. She has been a great help for me as when everyone goes to work or school she and I can take a walk or sit and talk. The parents have their own grieving to do but still be strong and on top of things for their kids. We also did a small remodel on our house to add a breakfast room which allows the whole family to have a beautiful room to sit in a look at our yard and be close to the kitchen. I found that as a family we needed more close contact. Our house isn't that big but we tend to drift to our own areas so the breakfast room / kitchen area brings us back together.
  
  Keep checking back here for more info on what is new in RP. I don't check every day any more but at least once a week.
  
  Best wishes
  
  Margaret

• Posted: 2008-10-22 21:25:47 By Maria P
• Hi Margaret and Kim,
  
  There is a group for parents with children with RP. If you'd like to join send me your e-mail to mpostlewate@yahoo.com and I will forward it to Katie.
  
  Laughter is great therapy and we should do everything we can to stay healthy. I feel they'll be gene therapy available in the next five or ten years, but since there are so many genes responsible for RP, it's difficult to say who will be able to take advantage of suc treatments. In the meantime, stay connected with the RP list, the board and others.
  
  Marisa

• Posted: 2008-10-26 01:52:47 By racer x
• b

• Help me Regarding on RP
• Posted: 2008-11-07 01:58:27 By Srinivas m
• Hi,
  Iam Srinivas.My Brother is suffering with RP. He is age is 18 now .he is completly Blind now.Could any one please help me is there any treatment.
  Iam from india.We went to many hospitals in india, we didn't find any treatment in india.
  
  If there is any treatment please mail me.
  my Mail id is sri_mandadi@hotmail.com