Please login to post a response.

• Retinits Pigmentosa
• Posted: 2010-03-18 11:37:24 By Tayden H
• Hi,
  I have a son that is going to be 8 years old. He is diagnosed with Retinitis Pigmentosa. He has trouble seeing things already and this is how i discovered something was wrong. Does anyone know of any researches out there? I am praying for him everyday and hope he can stay strong and continue to do the things he love. If there is anyone with the same and can give info or points that would be great. Any info and all helps. This is new for me and I am also learning about it. I am a worried mother of course but he seems fine. I just joined the site and getting to know different things and hopefully to meet people with the same similarities as my son so we can help each other through this. Thanks! Good luck to all of you out there fight this disease.

• Moms
• Posted: 2010-03-23 23:44:36 By John J
• Hi Tayden,
  
  33 years ago to my Mom's disbelief her son,"me" was diagnosed with RP. Yes there is plenty of research going on. I have been to Harvard Eye "Gund" institute. Formally the RP foundation many times. Quite a bit of travel but it is my fortune to be able to. My mom grasped at all hints of hope. I was put on Vit A Palmitate prior to the completion of the original study, put in dark glasses because someone said would help. I would suggest going to your local opthomologist and have them recomend the best RP guy in your area. You really need special help now, can't just go to any old eye doctor anymore. On the bright side they are doing some great things with gene therapy that may one day lead to a cure. My mom was so supportive of me being and living normal. Even though I did some things she did not agree with like pick a career that I can not continue when blind. (I would point him to law) I now have 4 children and enjoy life as it comes. There will be a cure keep the faith. My mom still does and I love her for it.
  
  BTW this site is the best source of info for RP.

• Posted: 2010-03-25 23:40:37 By Darran Z
• I was diagnosed when I was 6 years old, I'm now 35. My suggestion about what to do is give you son the tools he'll need to remain independant. There is lot so fresearch going on, but many hurdles and obstacles. They have told me for years that a treatment would be soon. That was 20 years ago.
  
  RP is genetic in nature, much like your genetics make up your hair color. You really can't change it. There are more than 100 genes responsible for RP. Which makes it that much more difficult to find a treatment for.
  
  There is nothing in the world a blind person cannot do that a sighted person can (well, maybe except drive). It sounds like you might need torequest services at school. Look into the IDEA (Individuals with Disabilities Education Act) to ensure the school is providing proper accomodations for yoru son. You'll want to get IEP (Individual Education Plan) that everyone is on the same page and has expectations of one another to help him achieve his goals.
  
  Darran

• Posted: 2010-11-17 21:06:30 By Nicholas A
• Hi Tayden
  
  Sorry to hear about your son. I'm 34 and I've had RP pretty much since I was born (my mother has it, too). The best thing you can do is to let his explain to his friends, teachers or whoever else he will be around how RP affects the eyes. Explain to them how it makes seeing in dark places very hard and also makes it hard to see in general. Somethiing else I'd recommend is to not baby him. Let him be independant and do things on his own. If he needs help walking at night guide him but don't do it in a way that the whole world knows the kid has sight issues. I myself like being helped when I can't see but I prefer it to be done "low-key." He will learn to adpapt the best he can. I will pray for him.