I Have Retinitis Pigmentosa

Retinitis Pigmentosa anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Retinitis Pigmentosa. You're not alone. 136 People

    Hey guys, I found out 2 mths ago

    that I have RP, I'm slowly finding out that there are a few things people are trying to help there condition, would love to hear of any theory's or treatments people are trying as when I was diagnosed I was told there was nothing I could do to help stop/postpone it. Any feed...
    randylove69 randylove69
    31-35, M
    2 Responses Jun 13, 2015

    I realize that so many of posting in this group

    are in their twenties/thirties. I am coming up on my fifteen year anniversary of having this awful disease. For the first time in my life, I have to think about how this disease affects my future. I am getting married soon, and we of course want to have kids. But the...
    eschelbm eschelbm
    26-30, F
    1 Response Jan 16, 2014

    My father has RP and I was hoping someone here

    could help me out. What was the first thing you noticed when you realized something was wrong with your eyes? What is having RP like? Does vision loss happen quickly or gradually? I stress about this everyday and am having troubles just living my life. Thanks so much for...
    ihopeyoucanhelp ihopeyoucanhelp
    26-30, M
    4 Responses Jul 23, 2015

    Retinitis Pigmentosa

    Recently found out this year that I have RP & it basically put a huge hole in my heart. It has been a very rough year dealing with this news but I'm slowly adjusting. I get angry about it at times, then sad, then just get over it. Seems like a vicious circle really. I am 23 by...
    danhan07 danhan07
    26-30, F
    3 Responses Oct 14, 2013

    Hi, I am 29 and yesterday I have my ERG done,

    confirming the diagnose, set when I was 14 years old. I am adopted and I don't have family history so I can't say if and when someone of my family lost their vision. I am quite afraid because no one can tell me for sure how much time do I have. Additionally, I am nervous that i...
    inanimate87 inanimate87
    26-30, F
    Mar 22

    Just A Random Urge To Spill My Thoughts And Feelings Into Words.

    So, as you all probably don't know, I graduated from University almost a year ago and it's been really tough; physically, emotionally, mentally, and mostly socially. What is "it" you might be wondering? I used to think it was solely my eye condition, but I've been starting to...
    bhhb bhhb
    22-25, M
    5 Responses Mar 30, 2013

    Bright Side

    I've been doing some research to find ways to make life easier and I've found a few practical tools at our disposal. If you've reached the 20 or less degrees of central visual field, you qualify for a CNIB card (Canada), which provides the following: • free transit • 1...
    Richardcarousel Richardcarousel
    31-35, M
    1 Response Oct 12, 2013

    so i have been taking this treatment now

    for 14 days. my peripheral is the biggest change. it took 10 days to get peripheral back ! now, it is still distorted, but not black anymore. i can see the rooms i am in, and i feel like i am around people again.. my light sensitivity ( i almost stopped going to town, the...
    jstneed2talk jstneed2talk
    36-40, F
    4 Responses Jun 8, 2015

    Hello guys! I have been diagnosed with

    retinitis pigmentosa 6 months back. I have always had problem seeing at night. I use to bang my head when I was a kid. I had a checkup when I was 10,but the doctor didn't find anything. I am 23 years old now. I don't have any difficulty in seeing at day time. Even during the...
    heisenberg101 heisenberg101
    22-25, F
    2 Responses Feb 2

    I'm 22, I was diagnosed

    when I was 12. When my doctors told me I would go blind, I was sad, but I was naive. Being only 12, when my doctors said 'probably not until you're 80', it felt like that was never even going to happen. Well, life has progressed, and so has my disease. I've recently noticed a...
    szmb szmb
    22-25, F
    4 Responses Mar 7, 2015

    I'm 28 years old and have known the presence of

    RP was present within my family my whole life. My mother has it, 1 aunt and 1 uncle, as well as one of my older brothers. I have a sister and another older brother that both did not inherit it. Early on in life I was regularly screened and for the first 22 years of my life I was...
    aliciagajda aliciagajda
    26-30, F
    1 Response Nov 3, 2014


    I was diagnosed with RP when I was 9... I'm 21 now and I can say with confidence that I live a normal life... I see my optometrist every 6 months and since I was diagnosed the results have remained consistent, they haven't gotten better and they haven't gotten worse .. I've been...
    Jkr92 Jkr92
    22-25, F
    4 Responses Oct 3, 2013

    Feeling Out Of Touch

    So I just turned 24. Every recent birthday I have had, I've felt more and more concerned about where I'll be when I'm 30, mostly because of my condition. As I get older, I tend to doubt myself in most aspects of life like if I'll be married by then, or even maintain a serious...
    bhhb bhhb
    22-25, M
    10 Responses Nov 9, 2013

    My mother was diagnosed with RP at a young age

    and so was I. Throughout the years I have seen her breakdown behind closed doors, while making light of her situation to others. I know that she doesn't want me to see how much losing her vision scares her, but with or without her fear, I am scared too. I'm 20 years old and feel...
    Kels2 Kels2
    22-25, F
    1 Response Apr 7, 2014

    I am a 38 year old female.

    Was just diagnosed 2 days ago when I went to the eye doctor for what I thought was going to be glasses. Smh. Didn't even get a cute pair of glasses out the deal. No "here's my new nerd glasses" selfies for me. Instead, I spent the afternoon crying.
    deleted deleted
    3 Responses Nov 15, 2015

    I just turned 25 a few months ago

    and went to the eye Dr only to find out that I have RP. It actually answered a lot of questions for me. I have been night blind for as long as I can remember and the past year I have been constantly tripping over things on the ground and taking corners to short and running into...
    rshelly22000 rshelly22000
    26-30, F
    Dec 8, 2014


    I am 47, recently got diagnosed with RP. I am married and have two daughters 19 & 27. I have kept this news pretty well to myself and family, I am finding it necessary to inform my co-workers. I'm nervous of their reactions, I have always been independent and this disease has...
    sunshinestilk sunshinestilk
    46-50, F
    2 Responses Jul 7, 2013

    Since I was little RP was a part of my life.

    My Grandma has it. My Mom has it and surprise I have it, too. So I maybe had some more time to realize that I'm going to be blind. But still repression is the "best thing" our family does. I think I still see too much to really deal with the topic. I'm glad that I can go...
    nanne12356 nanne12356
    18-21, F
    3 Responses May 27, 2014

    I was just diagnosed with Usher Syndrome on

    Wednesday. I've worn hearing aids my whole life. A little over two years ago I was admitted to the hospital for severe preeclampsia during my pregnancy. Immediately following, I started seeing flashing lights in my vision. I had been to numerous doctors, all of whom either said...
    AngieNickel AngieNickel
    22-25, F
    Feb 1, 2015

    I am not going to let my RP get me down.

    I have so much to be thankful for. I am so blessed. I have storehouses of beautiful things my eyes have seen in my memory. I have hope.
    deleted deleted
    1 Response Nov 26, 2015

    Rp=real Person

    I'm 20 and I was diagnosed with Rp at the age of 10. I'm currently a student in college and find it very difficult to figure out what it is I want to do with my life. Choosing a major is a big decision for me and I feel that I am restricted from doing some things with my Rp. I...
    tops14 tops14
    18-21, M
    3 Responses Jul 8, 2012

    I need advice.... I have recently started

    seeing heat rave are ripples... have anyone else experienced this? also I've been having trouble seeing my Computer screen... I called my Dr.but my apt is not till after x mas...I'm scared
    tattedsky tattedsky
    41-45, F
    4 Responses Dec 22, 2015

    hi I am 20 and I have RP

    and this is the first time I have spoken about it like this I have RP since birth and when I was a kid I never had a care In the world and now I have got older and I am really stuggling with the fact that I have this problem I also have very bad anxiety because of this I feel...
    sophRP123 sophRP123
    18-21, F
    1 Response Jun 18, 2015

    Hi all I am 22 and got diagnosed with RP at 19.

    It was more of confirmation as all members of my family on my mothers side have it too as we are the first family to carry it as a gene. My mam who just turned 43 is completely blind along with her sister and aunts and uncles. I have no let rp get in the way of me enjoying life...
    rogers791 rogers791
    22-25, F
    2 Responses Feb 11, 2014

    Your Insight Into Living With RP

    Dear All, I have been reading through your stories and am hugely moved by how you are learning to live with such a difficult condition. I am a novelist and am writing a story in which a 9 year old boy as RP. So as to represent the condition accurately and with authenticity, I...
    vonarnim vonarnim
    Mar 8, 2013

    Living With RP

    This might be long, I just want to get things off my chest so you don't have to keep reading. It's hard to talk to people about this stuff, I think they're tired of hearing it anyway. I'm 24 and was diagnosed with RP at 14, but I noticed night blindness when I was around. I'm...
    dg03 dg03
    26-30, F
    2 Responses Sep 7, 2013

    Hi everyone. it has been a few months

    since i wrote in. i am 39 yrs old with R.P. since i was 12. i has 2% vision last time i had it checked.. but of course i got worse. i have been looking into new research on eye disease and stubbled across a way to treat R.P. I am 12 days into this now, and i have my peripheral...
    jstneed2talk jstneed2talk
    36-40, F
    Jun 5, 2015

    Im 22 And Have Rp

    well i found out i have RP a month before my 21st birthday. since then my life has been a little different. I instantly couldnt drive anymore and i lost my job. i guess this is the first time ive ever spoken about it since. I want to know if its normal that when the subject is...
    joco89 joco89
    2 Responses May 21, 2012

    Hi guys, i am 38, diagnosed at age 24 (with 5%

    vision), but knew i had a problem at 13.. Dr.'s just couldn't figure out what it was.. My sister and i have had RP since the onset of puberty, strangely, my mother wasn't diagnosed until 53 yrs old. Only the girls have RP in my family, all of us infact. My kids (both are boys...
    jstneed2talk jstneed2talk
    36-40, F
    2 Responses Nov 3, 2014


    I feel exhausted from dealing with RP. I was diagnosed on the day I earned my Journalism degree, and subsequently had to leave my internship because I couldn't see enough to work. I just lost my driver's license and I'm feeling stressed because of the constant adapting. I've...
    Richardcarousel Richardcarousel
    31-35, M
    1 Response Oct 2, 2013

    hi my name is katelynne,

    im currently 16 and i have Retinitis Pigmentosa i was born with it. i get bullied because of it and i dont really have friends. i also suffer from depression because i feel like i cant be normal. i will never get my drivers license either which really bothers me cuz thats my...
    katelynne98 katelynne98
    18-21, F
    2 Responses Feb 9, 2015

    Living With Rp

    I'm 18, and I've known I had RP since I was six. Doctors believe I was born with it, but it never really sunk in until I was older. I have night blindness and most of my peripheral sight is gone too. I guess always having this hang over had made me stronger, and I don't let it...
    karainyair karainyair
    18-21, F
    3 Responses Jun 21, 2012

    My son was recently diagnosed with this disease

    and its been pretty scary understanding what are the best options for him. I have to say that reading these stories and talking to other families is really comforting and helps with this experience. I am glad that we can all come together and share our personal experiences...
    rubybk rubybk
    31-35, F
    Jun 26, 2014

    I was ten years old when I was first diagnosed,

    and I can still remember the dread I felt when my regular optometrist sent me out of the exam room to speak privately with my parents. I had gone in for a regular eye exam to get new glasses, which I had needed since I was seven, but I knew something was wrong when the doctor...
    MoonlightDragon777 MoonlightDragon777
    16-17, F
    Jan 9, 2015

    I was looken for blogs on RP

    when I came across this website I just want to get in contact with ppl who can I share my experience of RP
    Bakhtawarkiani Bakhtawarkiani
    22-25, F
    1 Response Nov 12, 2015

    I was 17 when I was diagnosed with RP

    but knew that I had already an eye problem since birth. I'm 20 right now and still have my 50% remaining vision. Just wanna share to you guys that there's a lot of promising treatments available. I've viewed in Youtube. Anyone who have improved their vision here? sorry for the...
    ademily46 ademily46
    22-25, F
    1 Response Dec 18, 2014

    My son age21 is suffering from RP.

    I did acupuncture .I purched Scyfix eye therphy machine.from India pharmaceutical company for one lac eighty thousand RS.I did stem cell therphy which costed me five lack RS in india.Thay all are cheaters.Dont trust them.
    sajadshah sajadshah
    22-25, M
    Mar 12

    I'm a 25 your old man currently living in

    Canada. I still have some vision but it is progressively deteriorating as I age. I cannot see at night and my peripherals are slowly narrowing in. It's hard for me to meet people because I come off as a regular guy so people would treat me that way and I am expected to be like...
    bhhb bhhb
    22-25, M
    Oct 30, 2014

    I Have Rp

    i was a freshman in high school when after going to a couple retina specialists they found that I have RP. They told me I'd me legally blind by 40, 50 or 60. Everytime at night I'm worried because i can't see as well and I wish I could just be a normal teenager and drive at night...
    Jujubee424 Jujubee424
    3 Responses Oct 3, 2011

    My daughter might have RP...

    My daughter is 9 and getting ready to go into 4th grade. Just last week we decided to take her to a new eye doctor because she has been having trouble with her night vision and peripheral vision. The new doctor took one look at the pictures they took and felt like he was fairly...
    mandadiane80 mandadiane80
    36-40, F
    1 Response Aug 14, 2013
    randylove69 randylove69
    31-35, M
    1 Response Jun 15, 2015
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