Pinky

Please no offend to other who have RP or US. Just offer for technology. I am admit that I has RP. I hope you treat me very good. Please don't hurt my feeling. I'm denial to have RP. I was born with RP and deaf. I don't want lie to anyone about I have RP. I am feeling guilty being denial. I am not real bad RP. I can't see at dark night. I can't drive. I can see anything on side expect on the bottom. I can't see on the floors only. I am taking a vitamin A to help delay the blind in the future. I am plan to get a vision surgery. I want to know about bionic and stem cell between. If you have RP or US. You can explain about yourself. If you have a friends who have RP. I will be glad to know. Please Don't insult. I am very sensitive. I am comfortable with anyone to help for best tech in the future. Thank you!

__________________

Information about Usher Syndrome

What is Usher Syndrome?

LEFT: Implanted: 6/12/09
Activate: 7/7/09 Freedom

Deafness

__________________
This advertising will not be shown in this way to registered members.
Register your free account today and become a member on AllDeaf.com

jillio

My college roommate, many years ago, had RP.

Pinky

That's good. I am waiting for everyone to respond my question. I need to find an answer. I am hoping for everyone not reject me.

__________________

Information about Usher Syndrome

What is Usher Syndrome?

LEFT: Implanted: 6/12/09
Activate: 7/7/09 Freedom

LuciaDisturbed

Thank you for admitting that you have RP. That took a lot of courage. I didn't know that there were surgeries that could fix the RP, interesting. I know a guy with RP, he has tunnel vision, but is not completely blind. He can't drive, though. He can see at night, though.

__________________


"Those who cannot remember the past are condemned to repeat it." - Philosopher George Santayana.


Implanted left ear 10/11/06, activated 10/16/06 - Nucleus Freedom

My own CI experience, my views on CI and ASL and Deaf Culture and Society

DeviantArt

LuciaDisturbed

Why would anyone reject you for having RP? It's not contagious. If they're afraid of you, then that's their loss. Don't worry about it.

__________________


"Those who cannot remember the past are condemned to repeat it." - Philosopher George Santayana.


Implanted left ear 10/11/06, activated 10/16/06 - Nucleus Freedom

My own CI experience, my views on CI and ASL and Deaf Culture and Society

DeviantArt

Cheri

Excuse my ignorance Pinky678, What is RP?

__________________

IslandGal

Hi there, do not let anyone let you feel down because you have RP. Those people who reject you are not your true friends. I recently got some good news from Foundation Fighting Blindness and I want to share it with you and others as well. Go to this link http://www.blindness.org/research.as...%204,%205,%206

Breaking News from the Foundation Fighting Blindness

04/28/2008

Now They See
Landmark Gene Therapy Provides Vision to Nearly Blind Young Adults

Three young adults with virtually no vision can now read several lines on an eye chart and see better in dimly lit settings thanks to an innovative gene therapy aiming to reverse blindness in a severe form of retinitis pigmentosa known as Leber congenital amaurosis or LCA. One person was even able to better navigate an obstacle course several weeks after receiving the therapy.

The three individuals are participating in a Phase I clinical trial at The Children's Hospital of Philadelphia, which is funded in part by the Foundation Fighting Blindness.

"I am overwhelmed with delight. We are delivering vision to people who were blind. This is the biggest advancement in the 37-year history of the Foundation Fighting Blindness," says Gordon Gund, Co-Founder and Chairman of the Foundation Fighting Blindness. "We have achieved an incredible milestone in curing blindness, and this advancement will help pave the way for the development of gene therapies to treat and cure a variety of retinal diseases including: retinitis pigmentosa, Stargardt disease, Usher syndrome, and macular degeneration. This is a great day for the Foundation and all people affected by blinding retinal diseases."

The development of the approach began when a form of LCA was linked to the RPE65 gene in 1997. Three years later, researchers began giving vision to dogs born blind from LCA, including the world-famous Lancelot. More than 50 dogs have been treated and all continue to see well. The Foundation Fighting Blindness has been funding this research virtually every step of the way.

Though the Phase I studies are primarily focused on safety, the first dose used in this study resulted in improved vision. An additional six individuals will be enrolled in a continuation of this study to evaluate safety and efficacy of differing doses. The vision improvement in young adults seen so far at the lowest dose gives researchers optimism that the treatment may provide near-normal vision to children in Phase II studies.

Results of the clinical trials, funded in part by the Foundation, were published on April 28, 2008 in the New England Journal of Medicine. The journal published the results of gene therapy trials taking place at CHOP and Moorfields Eye Hospital in London. A third trial of the gene therapy, sponsored by the NEI, is also taking place at the University of Pennsylvania and the University of Florida.

Jean Bennett, M.D., Ph.D., lead investigator of the CHOP trial, reports that the team studied three participants, who ranged in age from 19 to 26. All three had one eye treated.

Bennett says that all three individuals reported improved vision in dimly lit environments and in visual acuity in their injected eyes starting two weeks after treatment. Nystagmus- the roving eye movement associated with severe vision loss from LCA- was also reduced in all three individuals.

The treatment developed by this team of investigators involves delivery of a normal RPE65 gene to the retina to augment function of the defective RPE65 gene that leads to one form of LCA. Twelve different genes that lead to LCA have been identified.

The gene is delivered using a therapeutic virus known as an adeno-associated vector or AAV.

Researchers believe the vision improvement from a single injection will last for many years. In earlier laboratory studies, a single AAV-based gene therapy in more than 50 dogs born blind from LCA has been effective for more than seven years.

This study is being carried out by an international team led by The University of Pennsylvania, The Children’s Hospital of Philadelphia, the Second University of Naples and the Telethon Institute of Genetics and Medicine (both in Italy), and several other American institutions.

Pinky

Ok no problem. I am not completely blind yet. I want to have a surgery. I don't have a tunnel vision like this guy. I can't see in the bottom on floor. You know I mean? I can see everyone's sign language as normal. I can't see the dark at night. The lights is everywhere at outside. I can see and walk like normal. For example it's very deep dark in wood or forest without a lights or bonfire. I can't see it. I have to use my flashlight.

__________________

Information about Usher Syndrome

What is Usher Syndrome?

LEFT: Implanted: 6/12/09
Activate: 7/7/09 Freedom

Pinky

Retinitis pigmentosa - Wikipedia, the free encyclopedia

Go check it out. If you can't find a picture of eyeballs inside. You can go to Google and go see the image and type the RP. You will know.

__________________

Information about Usher Syndrome

What is Usher Syndrome?

LEFT: Implanted: 6/12/09
Activate: 7/7/09 Freedom

Pinky

Thank you for sharing with me. I agree with you about anyone who isn't my true friend. I want to fight with blind delay in the future. I am still taking a vitamin A supplement daily. I heard about Stem Cell is the best for Retina. I heard about bionic too. I am not sure about both these. I need to make decide for myself. I disappointed with President Bush vetoed for Stem Cell to heal for every patients need these due to serious health. The Democratic is support for Stem Cell. I am sure that RP and blinds can cure from the technology. I don't really want to lose my vision. Because I love the colorful! I am an artist and work on beading. I found it out I has RP when I was 15 years old by ophthalmologist told me about bad news. I can't drive. I said why?? He said, "You have a RP. You will not able to drive". I got ANGRY and crying so hard. I started to depress. My dad never know that I has rp since I was born. My dad was behind until he passed away. I found it out in 1997 of July.

__________________

Information about Usher Syndrome

What is Usher Syndrome?

LEFT: Implanted: 6/12/09
Activate: 7/7/09 Freedom

Aleser

I am deafblind, but not from Usher syndrome. I cannot imagine a cure being thrown in your face- that has never been an option for me, it has never been a temptation.

But I urge you, as someone who has seen far too many blind/vi people chasing fixes and cures... stop. The cure may never come. The cure that works for others may be useless for you. You might end up waiting 10, 15, 20 years worth of trials for the 'right' answer for you to become available- and in the mean time, lose substantial amounts of your vision.

Please, try and accept the fact that your RP will very likely continue to get worse... and if you don't change your perspectives about life with RP, if you don't prepare.. it's you who will suffer. It gets more and more isolating as you continue to lose your vision while lacking appropriate compensating mechanisms.

Meet with others who have RP, especially those with very advanced RP. Meet with a low vision specialist to discuss future options. Consider, especially for now and eventual night travel, orientation and mobility.

Your cure may never come. But the ability to love your disability- that can be worked on, developed, earned the hard way. It is something you can depend on, if you simply try. Don't sit around waiting for a miracle.

__________________
"She thinks... she can make people do what she wants or needs, what is right, by the sheer force of her own talent, not by forcing them... she can teach them and persuade them... that they'll catch it from her. This is still faith in their rationality, in the omnipotence of reason. The mistake? Reason is not automatic. Those who deny it cannot be conquered by it. Do not count on them."

Foxrac

That's odd.

I have RP (or US) but underdiagnosed and still drive.

I had diagnosed at twice, first time was in 1994 and found no RP/US and again in 2000 and found that I have RP/US but more difficult to make fact, it was their opinion right now, also I don't have any symptom, such as difficult to see at night or experience on loss of side vision.

If your RP isn't severe then you are supposed to drive, oh well.

__________________

Pinky

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!

__________________

Information about Usher Syndrome

What is Usher Syndrome?

LEFT: Implanted: 6/12/09
Activate: 7/7/09 Freedom

Pinky

Ahh you're lucky! I figured it out my vision level is 20/40 without glasses. What is yours?? I am not really worse RP or US. I did test on drive a car. My fiance is real worrying about me. I told him I can see anything. It can't be possibly. I did drive for test in my dad. He let me drive for learning drive when I was 14. I had no problem with drive. My b**tard old ophthalmologist didn't allow me to drive. He got made me angry and crying. He isn't really friendly to me and my mom. I got another ophthalmologist from my hometown. He is mean to me! He won't let me drive or take a contact lenses. I got a new Ukrainian ophthalmologist lady. She is very nice to me. She do understand how do I feeling. I told her I want to take a contact lenses soft. She said yeah! I have no problem with it at all. If I can't drive. I have to get a stem cell surgery for my vision in future.

1 of man whom from my school together. He have a worse Usher Syndrome than I am. He used to drive in 1997 until 2002. He have a trouble with his vision at night. His friend helped him to drive on a wheel. I was so bitter because he was driving. It's not fair to me. I became rebellion at my mom for tell to supervisor for not give me a Drive Education class when I was Sophomore. I wasn't forgive my mom for tell. She had to tell him from doctor's said no. The man was a drive. His vision is getting worse and go bad to tunnels. His doctor commanded him not to drive anymore. He is going to be a blinds. He can't see anything just a little tunnels vision. It's so sad!

__________________

Information about Usher Syndrome

What is Usher Syndrome?

LEFT: Implanted: 6/12/09
Activate: 7/7/09 Freedom

Foxrac

I'm sorry about you had hard time with 2 of eye doctors, I'm aware that not all eye doctors are good but never experience with bad eye doctor in my life. There's currently no treatment on public for RP/US but would probably come in 10 years or little over and new treatment are currently undergoing and work on it, such as gene therapy, stem cell or others.

That's shame about couple of your doctors refuse to make prescription on contact lenses or glasses, it's important for reading, watch tv and clear vision. I have wear contact lenses since 14 years old and had been worn glasses for 1 year before switch to contact lenses in long time ago. I'm candidate for LASIK but I decided to wait in near future. If you feel not trust to both of them or reject to give something then just go to regular eye doctor and ask them to take exam for glasses or contact lenses.

Now, you are lucky about found other better eye doctor, just keep with her.

I'm little sick of floaters (occurred in 2002 after bad accident from football) but not part of symptom with RP/US and it will go away in certain years, it can be few or several years.

__________________

SxyPorkie

I also have US.... Dr told me not to take vit A cuz it will damage your liver.. so i quit taking them... my visions is not getting worse... i am 63 now... i still cannot go outside alone at nights... someome has to be with me...i deat with it just fine.. no problem..at night i put dim light every room so i can see my way around to bathroom or bedroom.. thats all

__________________
Life Goes On!!

Pinky

Really?? I talked with my Liver doctor about my liver from CT scan. He asked me if I am taking any medicine. I told him yeah. I was on birth control pills. He said I have to stop take it due to my liver spot. I will get a CT Scan test this Sept. I hope it's nothing serious. I didn't feel any sick or pain in my liver. That's so strange. I had an ulcerative colitis. My GI doctor found it out I had an infection in my colon last January. I was illness for 15 days. I am getting better now. My Liver doctor didn't say about my taking vitamin A. I guess I have no problem with it. But only birth control pills isn't good for my liver that all.

I has RP since I was born. I can't see at night either. My fiance always with me at night all the times. I didn't like to go alone at dark. It's scared me. I am feeling like someone attempt to rape or kidnap me. That's why I don't like go walk alone at night. I like to stay at home safe for night. I'm 26 now. How about you are drive or not?

__________________

Information about Usher Syndrome

What is Usher Syndrome?

LEFT: Implanted: 6/12/09
Activate: 7/7/09 Freedom

Pinky

Before I found it out. I has RP. I got first contact lenses when I was 15 years old. It was a hard. I didn't like it. I got an eyes infection when I was 18. I stopped wear a hard contact lenses. I tried to fight with ophthalmologist to let me get a new soft contact lenses.

Of course, I will keep ophthalmologist lady forever! She is so nice! She let me take a contact lenses with soft.

__________________

Information about Usher Syndrome

What is Usher Syndrome?

LEFT: Implanted: 6/12/09
Activate: 7/7/09 Freedom

Foxrac

Oh, got it...

I don't like hard contact lenses either, never had worn like that.

I used took Vitamin A with bigger UI before but not anymore because of make feel so funny and eyes seem render so fast then stopped it and switch to multi-vitamin with low UI of Vitamin A then feel not affected at often, also included with Lutein too, however I'm not take it so right now.

You can eat alot of carrots instead of take vitamin A pills because carrot is more natural.

__________________

Pinky

Retinitis pigmentosa - Wikipedia, the free encyclopedia

Retinitis Pigmentosa (pigmentosis) eye disease: cause & treatment options - cmv, vitamin therapy, mcs

When you enter this link. Look at "Cause" go click on harm to eyes. I figure it out. It's not good. You're right talk. I stopped taking Birth Control Pills. But I need to stop take Anti-Depressant Celexa either. I need to see my doctor again soon.

Yeah you're so right about eat a carrot. It's good for eyes. The Omega Oil fish is good for eyes too. I am still taking a Multi-vitamin "Centrum" from A to Zinc for my colon. My nurse gave it me from the hospital. I really hate drugs kind. I thought vitamin is good for health. It's so strange.

__________________

Information about Usher Syndrome

What is Usher Syndrome?

LEFT: Implanted: 6/12/09
Activate: 7/7/09 Freedom

Pinky

hey Sxy can I ask you a question???

__________________

Information about Usher Syndrome

What is Usher Syndrome?

LEFT: Implanted: 6/12/09
Activate: 7/7/09 Freedom

jillio

It takes a bit more than getting a Democratic president in office to find a cure for RP.

Pinky

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??

__________________

Information about Usher Syndrome

What is Usher Syndrome?

LEFT: Implanted: 6/12/09
Activate: 7/7/09 Freedom

jillio

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.

Pinky

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.

__________________

Information about Usher Syndrome

What is Usher Syndrome?

LEFT: Implanted: 6/12/09
Activate: 7/7/09 Freedom

jillio

Sure. Take your time.

Bottesini

China Stem Cells - China Stem Cell News - Home

A link about stem cells availability in China.

__________________

jillio

Thanks, Bottesini. As I thought, the treatment is still experiemental, and not approved.

Pinky

Bott, Thank you! I found other Stem Cell for Retina.

FOXNews.com - Retina Stem Cells May Restore Sight - Health News | Current Health News | Medical News

__________________

Information about Usher Syndrome

What is Usher Syndrome?

LEFT: Implanted: 6/12/09
Activate: 7/7/09 Freedom

Bottesini

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.

__________________