Anyone have Retinitis pigmentosa or Usher Syndrome?

hey Sxy can I ask you a question???
 
Pinky678 said:
Really? I has RP as Retina. I watched on tv news and read on newspaper about stem cell research will heal for RP and Retina to see. If you're blind. You would get a Bionic for your vision to see. I watched on tv "It's miracles" on ABC or CBS channel. It used to be show up but not on air now. The blind boy wore a thick lenses glasses. It was his born that way. His parents decide to get him a surgery for bionic to see. After surgery. He can see anything. It made me so cry and happy for him. The important is miracle to god will plan for you to get heal your vision. Trust in God. Can I offer you something? I'm taking a "Bausch & Lomb with Lutein! Ocuvite Nutrition for Eyes" Supplement. It will help delay the blind in future. Trust me! Go check it out at Ocuvite If you want to get one. You better go to Walgreen or Walmart. It will be cheap.

It will not wait for 10 to 15 years later. It will happen if Democratic President win. You know Democratic is support for Stem Cell Research. I never lose my vision for long times since I was born. That's so strange!
Click to expand...

It takes a bit more than getting a Democratic president in office to find a cure for RP.
 
Sxy, You told me about if you're taking a vitamin A for your vision. Doctor said it will cause damage your liver?? I have a bad news. My family physician found it out. I had a Liver spots. But My other GI thought I don't have problem. Maybe cysts or mass. I don't know. My professional doctor for liver ordered me to stop taking birth control pills. I will have a CT Scan on Sept. I hope it's nothing serious. Just pray. My sister in the law drove me crazy about vitamins is the best than a medicines. She isn't my herbalist!

Jillio, Did you know China have a Stem Cell for every patients available??
 
Pinky678 said:
Sxy, You told me about if you're taking a vitamin A for your vision. Doctor said it will cause damage your liver?? I have a bad news. My family physician found it out. I had a Liver spots. But My other GI thought I don't have problem. Maybe cysts or mass. I don't know. My professional doctor for liver ordered me to stop taking birth control pills. I will have a CT Scan on Sept. I hope it's nothing serious. Just pray. My sister in the law drove me crazy about vitamins is the best than a medicines. She isn't my herbalist!

Jillio, Did you know China have a Stem Cell for every patients available??
Click to expand...

Can you provide me with a link to support that? I'd be very interested in reading it. Stem cell research is still very new, and in the research phases.
 
jillio said:
Can you provide me with a link to support that? I'd be very interested in reading it. Stem cell research is still very new, and in the research phases.
Click to expand...


Can you give my time?? I will ask my husband to find a link. But I am going to my sister in the law's house soon. My husband is getting ready for work soon. I will ask him to give me a link. I will give it to you soon as possible.
 
Pinky678 said:
Can you give my time?? I will ask my husband to find a link. But I am going to my sister in the law's house soon. My husband is getting ready for work soon. I will ask him to give me a link. I will give it to you soon as possible.
Click to expand...

Sure. Take your time.
 
Bottesini said:
You are welcome. I looked at the one you put up too. They were talking about the macula too, which is what I have a scar on in my right eye. I couldn't understand if they meant they could fix something like that with stem cells too. I don't think mine can get fixed, but I wish.
Click to expand...

They are saying its a long shot.
 
Pinky, you're not the only one. Matter of fact, I found out I have a combination Macular Degeneration/Ring Scotoma in the beginning stages. This is on of the reasons my eye doctor has me involved in training with a guide dog early, a sort of prevention thing just in case it gets worse, although extremely unpredictable. At the moment, I'm sighted, although started noticing night vision problems. It surprised me as it is a genetic condition (Not Ushers), and I'm learning to deal with it very well. ;)
 
I don't have Macular Degeneration. Do you have your own guide dog for your sighted and deaf? My vr asked me if I would get a guide dog. I told him no. I already have my own small dog. I don't like to have a shedding fur on everywhere. I didn't need the cane because I can see like a normal and walking fine. I don't want anyone to know who I am if I become a blind. It really scared me! I don't want to lose my favorite stuff. I am doing with beadwork on magnifier with bright light. I want to have a surgery on my vision in future. But I am still research to find a best fit for me. I am not sure about stem cell and bionic between. In our American can't have stem cell for patients. In China have Stem Cell legal for every patient's disease.

SCBassist said:
Pinky, you're not the only one. Matter of fact, I found out I have a combination Macular Degeneration/Ring Scotoma in the beginning stages. This is on of the reasons my eye doctor has me involved in training with a guide dog early, a sort of prevention thing just in case it gets worse, although extremely unpredictable. At the moment, I'm sighted, although started noticing night vision problems. It surprised me as it is a genetic condition (Not Ushers), and I'm learning to deal with it very well. ;)
Click to expand...
 
Pinky: They have been promising cures for things for years. Nothing new. Nothing ever comes of it. My mum was supposed to be cured of cancer twice before she died so I believe in these cures about as much as I believe in Santa or the tooth fairy.

I have severe light sensitivity so I have to keep my eyes completely covered in light.

I think that once you get over the denial and learn to accept your condition and learn Braille, Blind skills etc you will be a lot better off. Believe me it is a hell of a lot worse losing your sight then actually being blind. Being Blind or even Deafblind once you've learnt how to addapt is not such a terrible condition.
 
My vision is still 20/40 never change since I was born. I don't believe in Santa or Tooth Fairy. They are myth! Ha Ha I believe in God. I am hope to find a bionic for blind to see. I watched on tv "it's miracle". The blind boy was born with blind not a profound. He got a surgery to put a bionic in his eyeballs. He got heal and can see. It made me cry and happy! If you want to see from blind. You have to be faith as miracles to see. By the way I am not full blind yet. I have only blind at night that all. I can see everything very well. But I can't see on the bottom like floor. I am still wear a glasses and contact lenses. But I can't drive. I can ride on bus by myself. I can ride on a bike.

dreama said:
Pinky: They have been promising cures for things for years. Nothing new. Nothing ever comes of it. My mum was supposed to be cured of cancer twice before she died so I believe in these cures about as much as I believe in Santa or the tooth fairy.

I have severe light sensitivity so I have to keep my eyes completely covered in light.

I think that once you get over the denial and learn to accept your condition and learn Braille, Blind skills etc you will be a lot better off. Believe me it is a hell of a lot worse losing your sight then actually being blind. Being Blind or even Deafblind once you've learnt how to addapt is not such a terrible condition.
Click to expand...
 
~♥~Pinky~♥~ said:
My vision is still 20/40 never change since I was born. I don't believe in Santa or Tooth Fairy. They are myth! Ha Ha I believe in God. I am hope to find a bionic for blind to see. I watched on tv "it's miracle". The blind boy was born with blind not a profound. He got a surgery to put a bionic in his eyeballs. He got heal and can see. It made me cry and happy! If you want to see from blind. You have to be faith as miracles to see. By the way I am not full blind yet. I have only blind at night that all. I can see everything very well. But I can't see on the bottom like floor. I am still wear a glasses and contact lenses. But I can't drive. I can ride on bus by myself. I can ride on a bike.
Click to expand...

Your denial will only get you so far...

"I only cannot walk alone at night"
"I only can't see the steps at the theater"
soon it'll be
"I only can't read SMALL things"
"I only trip over curbs SOMETIMES'


You're blind. Which has nothing to do with snellen acuity and everything to do with field of vision. And you use your sight as a crutch because you think that being blind is inferior to being sighted. And it will GET YOU NOWHERE.

I walk alone at night. My vision is nearly completely blind- I can not see an SUV and walk right into it, when I'm not using my cane.

When is the last time you went for a two mile jog in the dark, alone? When is the last time you felt safe taking the bus at night? When is the last time you ran to the store for something at 2 am alone? When is the last time you felt safe going down the stairs in a dark film?

You may see more than me, but in this situation, you're the blind one.
 
hey i know life sucks when things happen that you can't help with. I got US too, diagnosed when i was 15 and it really destroyed my life when I had to stop playing sports because as you get older you compete at night and I couldn't do all the things I use to do when I was younger. Just like you I believe it can be fixed and for people that tell me to stop believing, they can go to hell for having no faith.

Anyways you're smart for taking multi-vitamins and omega fish oil. I take those too. And as for vitamin A causing liver problems, that's only the case if you take too much vitamin A for a long period of time. I was recommended to take about 5,000 to 10,000 IU of vitamin A daily but if i take more than that for a long time, then it'll have side effects. Also, I would suggest you try changing your diet and exercise daily if you hadn't already done these. FOr dieting you wanna stay away from salt, white sugar, soda, junk food, and anything high in sugar and consume 3 to 5 fruits and vegetables a day (nothing new i know lol) and drink lots of clean water. I don't have all the info but you can go to google and look up 'diet and vision' or 'diet for vision improvement' or something like that and read some articles. I been exercising for a long time so that might be why my vision deteriorates slower than it should but i'm gonna start changing my diet cuz it seems reasonable and see if it slows it down even more.
 
Back
Top