Blindness & Visual Impairment Support Group

Blindness is the condition of lacking visual perception due to physiological or psychological factors. This is the group to discuss living with blindness, sharing experiences, and for those that may be facing the prospect of a life without sight. Find support and answers among people who know what you're going through.

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Retinitis Pigmentosa?

I've been trying to find others with RP and compare notes. There seems to be noone near me that can even relate and I wondered..would anyone be willing to share their situation with RP and what they have experienced with their sight? Because this disease is so uncertain, I find it a bit of a comfort to know what others experience so I have some ideao f how my pattern of vision loss compares. Don't want to make anyone uncomfortable though.

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deleted_user
deleted_user

Hi ive been trying to figure out whats wrong with my eyes, im not sure if RP is what i have or not, my eyes are bad at night, i keep getting all these different things from my doctor, ive been hearing i have a chance for glaucoma or some sort of macular thing that younger people get. I did my own research and i found that RP might be what i have since macular deteriaration is for older peole and im only 22. But anyways... my eyes are worse at night, i noticed this one night whenever i was putting my son to bed and i turned off his lights, and it was like i was looking around and i could see, but it was like my eye sight kept getting darker. I have a hard time just seeing at night and sometimes if my eyes are open they get blury. Still not sure whats wrong with my eyes, but im very worried ill be blind by the time im 40.
deleted_user
deleted_user

Hi Shannon! It's difficult to say if RP is the problem with your eyes or not. I know the first specialist I saw wasn't sure at all what was wrong with my vision until he sent me for an electroretinogram which revealed that neither one of my retinas was responding to light and all responses were "severely reduced". That coupled with my visual field test results and my night blindness was what made the diagnosis. There are some very specific tests that your doctor can do to make a diagnosis and test your optic nerve, retinas, circulation to your eyes etc. Sometimes it's not a quick diagnosis and I know how hard that can be. I was driving and working and carrying on until they realized just how little I was seeing and then it all changed. You tend to adjust as the changes take place slowly over time and not realize until there is a fairly drastic reduction in vision. Even if you did have RP though, you could have vision way past 40. There are no hard and fast rules it seems. You must be concerned to have an answer though.
deleted_user
deleted_user

Yes it is frustrating. They dont know if i have glaucoma or MD which is weird because im only 22!! I hope i have neither but who knows. Im going to start taking vitamins, they also told me that there is medicine i can take for MD. I hope i dont have bothe glau. and MD that would suck i would be completely blind. If i do go blind i want a seeing pony lol, thats the only way i cheer myself up about it! lol
deleted_user
deleted_user

Seeing eye ponies are hard to get on public transportation. You also need bigger bags to clean up after them.

I hope you keep your vision, too, but rest assured that you CAN hack it, if you have to.
deleted_user
deleted_user

I was diagnosed with RP in December 2007. I would be more then willing to talk to you about it. You can post questions here or you can email me on here in private and I will send you my email address.
deleted_user
deleted_user

my brother in law has been diagnosed with RP in his 20s, he is now 34. 10 years ago his sight wasn't great, but i have noticed a definite difference in his sight since then. i feel like he isnt being completely honest with how bad it's getting because he doesnt want to appear handicapped, but i want to help him any way i could. if anyone with RP is willing to share their stories, i would really be grateful. i know there isn't a cure, but i'd like to know what others have done to slow the process, or aid with sight. i bought him a pair of amber tinted sunglasses that really help him see better in sunlight. does anyone have any other suggestions or stories from experience what can make this easier for him?

thank you so much..
deleted_user
deleted_user

When I was younger, I was told that I have Leber's Congenital Amaurosis (LCA), but now I'm being told that it's possible that I have RP. Because both of these eye conditions are so closely related, it's hard to make an accurate diagnosis.

I've researched both conditions and they have similar symptoms.

So I'm interested in talking with people with RP and LCA.

Debbie
deleted_user
deleted_user

Hey, I was diagnosed with RP when I was 14. My vision at this point is stable. My retinal specialist told me I had 10 yrs till my eyesight goes. Its been 9 yrs and things have been going strong. I noticed that my nightvision is complety gone. The light bothers me. My eyes are extremely sensitive. Sometimes i can't even put eyelinger on. lol
deleted_user
deleted_user

I am having retinitis pigmentosa since age 7, now I am 47. I tried many medicine incl Chinese herbs,acupuncture,traditional and untraditional and western food supplement,such as Amway,Shacklee,21st century,blackmore lutein,vitamin A,cod liver oil for the past 15 years. I even go for ear digging,believing it could be of help.It cost me me more than USD50,000.
Very frustrating and disappointed,NONE OF THESE HELPS!
Recently I go for Ozone therapy, now its only 5 treatments,I started seeing more clearly and I drive better now.
For other RP patient out there, try it in your country. I am doing it in Malaysia.
If you want more info, email me at jklfong@gmail.com
deleted_user
deleted_user

My Dr is torn between RP and Stargardt's. All this is new and I am still trying to wrap my head around all of this. I went in for a simple cataract surgery and everything has gone downhill since. It turns out that I never needed cataract removal, they were very early stage. I have a new specialist and he did FAA testing, field of vision testing and wants me to have an ERG & EOG test done to determine which disorder I have. I am not able to return to my job (vision does not allow me to perform functions essential to job) and I have had to surrender my driver's license. The license thing has been hard, it is one thing to choose not to drive but another all together to have it taken from you. Dr wants me to consider starting Braille lessons while I am still seeing. I keep thinking "I can not be blind, even if only by legal definition". I think I am in denial...lol
deleted_user
deleted_user

After spending RM14,000.00 treatment of my RP with Ozone therapy for 15 times over 2 months.
It is sad to say that the result was NOT satisfactory.may be only 5 - 10% improvement!Damn it!
deleted_user
deleted_user

I have been losing more and more sight for the past 16 years. I can now see only very blurred light/dark, like indistinct shapes through an almost solid fog. The doctors told me that I had the cone/rod distrophy form of RP. Basically, the surface cells of my retinas are dying and flaking off, so now I literally have clouds of dead cells - like the stuff that peels off your skin from a sunburn - floating around in my eyes. As one doctor put it after a failed examination attempt, 'if we can't see in, he (me) can't see out.'

I can't find a job. I can't do many of the ordinary, basic things of everyday life. My son just got married last Friday and I couldn't see him standing with his new wife during their vows. I used to be a hard working family man, but vision loss robbed me of my career, my marriage, and my life.

Anyone who suffers from RP or any other vision disorder has my utmost and sincerest sympathy.
deleted_user
deleted_user

Hello all,
My name is Sebastian Arrieta Morante, Im a MD by profession and I am writing to say hello and tell you all about a "new" (I remark new because it really has been done for many years and we are having very interesting results with retinitis pigmentosa).
While this is not a cure, the treatment helps stop the progression of the disease and improve symptoms.
The treatment I offer is with autologous stem cells, we implant your own stem cells endovascularly onto your eyes.
Stem cells are responsible for regenerating the entire human body, they reside in our bones, and this is the reason why they regenerate so quickly after a fracture for example (unlike the rest of the body).
I work at the Institute of Interventional Radiology Brazzini, institute seriously committed to our patients and we are pioneers in Lima, Peru with the specialty of Interventional Radiology, modern and relatively new specialty based on helping patients with the help of technology improving their quality of life and in many cases curing them of other diseases. (www.brazzini.com.pe)
I leave a couple of links that contain articles with scientific validity and medical journals published worldwide on stem cells and retinitis pigmentosa.
I repeat that this is NOT a cure, but we are confident we can help stop the disease progression and improve symptoms associated with this degenerative disease.
1. Rescue of retinal degeneration by intravitreally injected adult bone marrow-derived lineage-negative hematopoietic stem cells. http://www.jci.org/articles/view/21686 (we do not use this method, but is to have an idea of what is being done globally).
2. Bone marrow-derived stem cells preserve cone vision in retinitis pigmentosa. http://www.ncbi.nlm.nih.gov/pubmed/15372096
3. Human Embryonic Stem Cell-Derived Cells Rescue Visual Function in Dystrophic RCS Rats. http://www.ncbi.nlm.nih.gov/pubmed/17009895 (I guess what you're thinking, it talks about the treatment in rats, but we already have experience in people and the testimony of a Dr which we treated with very good results).
4. Stem Cells: New Opportunities to Treat Eye Diseases. http://www.iovs.org/content/42/12/2743.full
5. Stem cells in regenerative therapy as tools for retinal degeneration http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3192438/
Forgive me if I bore you with this information and medical terms, but I think it is important that patients and especially if they are my patients, that they must have all the information available to treat their illness, and what better way than with scientific papers showing that there is light at the end of the tunnel.
You can ask me any question at this e-mail: sarrieta@brazzini.com.pe, I will personally answer all of your questions.

Dr. Sebastian Arrieta Morante.
deleted_user
deleted_user

Hi, has anyone with RP do stem cells implant? Can anyone share your experience of stem cells treatment?such as; how effective?how long recovery?any side effect?how much the cost?which hospital is the best in stem cells? and etc...?