Retinitis Pigmentosa Support Group

I would like to first say that there IS hope. I don't know what kind of doctors she is seeing, but they sound like assholes. With all the gene therapy and stem cell research going on, I'm sure there will be something in the next decade to cure or at least treat RP and hearing loss.
I myself am a sufferer of Usher's syndrome. I have had hearing impairment all my life and was diagnosed with RP 2 months ago. I was grateful my whole life that I at least had good vision. But that was robbed of me. It is hard and a devastating disease, but I have learned to deal with it. I at times, have been depressed about it too, just like your girlfriend. But I have high hopes of a cure or treatment in the near future. Just out of curiosity, what type of Usher syndrome does she have? There is type 1,2, and 3.
All I can say for her is to keep her head up and hope for the best!!

I'm so sorry to hear about what your girlfriend is going through. It's wonderful that she has you to rely on and be supportive for her. I have RP and I wanted to suggest that she may want to try a more natural approach. Something that can address her overall health perhaps. This way, if she sees her general health improve, not only will it drastically improve her mental attitude but it gives her hope that she does have some power in her own health. Being told there is no hope by the very people we turn to for help is devastating. I was told the same thing. That's how I ended up in a homeopath's office. I figured I had nothing to lose. Now, I'm so sure that there IS hope and I realize that what we think and believe has a huge influence over every aspect of our health. If your girlfriend could bring herself to focus on the things she can change that will improve her life it can't hurt her Usher's syndrome and will improve her quality of life in so many ways. I am looking at courses in homeopathy now to try and share the hope I have with others who feel hopeless. There are many natural health avenues that your girlfriend might enjoy. I truly hope that she will consider these and that she finds happiness again.

I TOO HAVE RP AND SADLY IT IS A DEPRESSING SITUATION 2 B IN. NOT ONLY DO I HAVE IT BUT SO DOES MY 7 YR. SON. ALMOST ON A DAILY BASIS I FIND I AM ANGRY AT MYSELF FOR PASSING ALONG TO HIM THE GENE THAT CAUSES RP.
PEOPLE W/ RP DON'THAVE TO LIVE LIKE THEY HAVE IT. MY HUSBAND IS IN THE AIR FORCE AND DURING DEPLOYMENTS I AM LEFT TO FEND FOR MYSELF. AT TIMES IT'S SCARY AND ROUGH BUT THE SENSE OF PRIDE THAT FOLLOWS IS WORTH IT. MAYB UR GFRIEND SHOULD TRY GOING TO THE OH SS BOARD AND THEY HAVE RESOURCES FOR HER WHERE SHE CAN JOIN SPORTS TEAMS AND ACTIVITES CATERING TO THE VISUALLY IMPAIRED.
I LOVE DR. MICHEAL KUNESH. HE IS LOCATED IN KETTERING OHIO ON FAR HILLS AVE. I AM FROM DAYTON AND HE WAS MY DR. FOR YRS. HIS FATHER WAS MY MOMS DR, SO HE HAS EXTENSIVE EXPERIENCE. WHEN NOONE ELSE WAS WILLING TO OPERATE ON MY CATARACTS BCUZ OF MY AGE, HE DID. HE IS VERY UNDERSTANDING AND COMPASSIONATE. ONE THING ALOT OF PEOPLE W/ VISUAL IMPAIREMENTS DO IS GO TO AN OPTHOLMOLIST. THEY ARE NOT USUALLY EQUIPPED WITH MUCH KNOWLEDGE ABOUT RP. SEEK A RETINIA SPECIALIST, LIKE DR. KUNESH. IT IS A FAM RUN BUSINESS. HIS SISTER CHRISTINE KUNESH ALSO PRACTICES IN THE OFFICE ALTHOUGH I'VE NEVER BEEN SEEN BY HER.

I myself do not have RP but my father and my nine year old son do. I understand how you feel watching her go through this. My dad has always been extremely suicidal because of the RP but he like your girlfriend feels like there is no hope. My son was just recently diagnosed and he has worlds of hope because his father and I make sure he knows that anything is possible and that we will never stop looking for a cure. The best thing you can do is support her. Love her and let her be angry, I'd be angry too as i'm sure you would. But my son's dr. was super nice and he has me to give him lutein and zeaxanthin.

Thank you SO MUCH to you all that replied. You all have given me so much info in your replies that it gives us an avenue to move forward. Thank you Nastle98, DoctorH, CrystalSN, & Blacklabel for sharing your encouragement and information. Her mom took her to a "scientist" who did a hair sample and wanted to balance the toxins in her body by drinking these liquids. That has balanced her chemically but hasn't improved her RP or Usher's.... Nastle.. I'm not sure what stage of Usher's she has. I'll have to ask her and let you know. To Crystal, I will try to contact Dr, Kunesh and see if he knows anyone in our area we can trust. We are on the opposite side of Ohio but if I have to I will drive her ANYWHERE to see a doctor that can give her some HOPE. I cannot tell you how amazing it makes me feel to speak to the RP community for the first time and have such great responses. I do let her be angry, I would be too. But, I don't want it to get to the point where her anger is destroying her emotionally and physically. I will look into the Lutein and zeaxathin. THANK YOU eveyone. I will give you all updates and please let me know how you all are doing. The strength you all have is amazing. Until then I will stay positive and keep telling her everyday to NEVER give up and THERE IS HOPE!

I NOTICED U SAID U WISHED U KNEW WHAT SHE WENT THRU. EVEN THOUGH U CAN NEVER ACHIEVE THAT EMOTIONALLY, U CAN PHYSICALLY. IF U CONTACT THE SCHOOL FOR THE BLIND IN UR STATE, THEY ACTUALLY HAVE GOGGLES THAT U CAN WEAR THAT SIMULATE WHAT IT IS LIKE TO SEE THRU THE EYES OF PEOPLE AFFECTED BY RP. SOME SCHOOLS ARE RELUCTANT TO LOAN THEM, BCUZ THEY R PRICEY, BUT ITS' WORTH A SHOT. THEN JUST DO THNGS SHE WOULD DO ON HER OWN. GO 4 A WALK, COOK A MEAL, GO 2 THE MALL. MAYB THAT CAN HELP.

I have just looked at the Ohio State School for the Blind in Columbus and I didn't see anything on their website about it but I'm going to contact them and see if they have those goggles. Maybe even over here in Parkersburg, WV. I'm closer to there than Columbus.

I have just looked up the directions from here to Dr. Kunesh's office and it's 3 hours 5 mins from here. Distance is no matter, really. I'm just curious what kind of treatment does he do? Does he do any specific treatment for RP and Usher's Syndrome or does he just check her eyes and tell her how it's progressed? I'm thankful you told me about him. I would just like to know a little bit more before calling his office to make an appointment.

Also, I keep forgetting to pass on this bit of information. One thing the cell doctor did here is put her on Juice Plus. It's a daily supplement of Fruits and Veggies. It's two Fruit pills and two Veggie pills a day. We've both been on it (she wanted me to go on it with her when the Dr. put her on it so I did) for over 2 years now and I will not go a DAY without it. DoctorH suggested to try a homeo or natural approach and eventhough the Juice Plus hasn't restored any vision or hearing loss, her immune system is stronger and she refuses to go without it. Neither one of us has had a cold or any sinus problems. I myself (did) suffer from sinus and chronic tonsillitis but since I've been on the Juice Plus I don't have ANY sinus problems or any problems with my tonsils. Anyway I just wanted to pass on the info on Juice Plus because this stuff WORKS and it makes your immune system as STRONG as it can be. I know that when she feels great her RP is more stable... Meaning it's a LITTLE easier to deal with. When she feels sick or run down or hasn't had enough sleep the effects of the RP and U.Syn are a lot worse. The Juice Plus helps tremendously. Here's a link to it if any of you want to check it out and check out the clinical studies.

https://www.juiceplus.com/nsa/cont...

I am in NO WAY soliciting anything... Just to put that out there. I really think more people in the RP community need to know of Juice Plus...

Thanks again Crystal... Please let me know about Dr. Kunesh. I have all his information saved.

My GF found this site...

Prigmeton.com

Is this site a scam?? Anyone else hear of this?? I tried to research it on Google and I only found one site that said it was a scam. It's some company in New Zealand that claims this is a RP cure, 100% herbal... It costs $90 a bottle and you take one pill a day... We were both wondering if anyone else has heard of this treatment? I'm leaning toward "scam" but I would like to know what you all think of it...