Rosie's Story: Treating Retinitis Pigmentosa

The story of how CIRM-funded research helped preserve vision for Rosie Barrero, who was diagnosed with Retinitis Pigmentosa as a child, and faced the prospect of losing her vision as she became a new mother. [Show ID: 36478]

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[thebutcherds]

28 years old now, I Have RP, it started like 8 years ago with slight night blindness, then Flashes and pixels, then my visual field started narrowing, Now I got tunnel vision and can barely do anything alone, I was diagnosed with depression due to RP psychological impact, My social life is semi dead, but I still have hope that one day our great scientists will find a proper treatment to make our lives better .

[imran]

My best friend was diagnosed with RP, and he is going to a doctor in Egypt, and they are going to do a double needle procedure. I'm hoping and praying that his vision is restored.

[suryaprakash]

I wish RP treatments get fda approved and change millions of lives ❤

[aeon]

I am going to 49, living with RP for 23 years, there has been significant loss of vision in last year 10 years and a lot of other health issues, worst part is severe dry eyes developed in last 3-4 years! I am a successful senior marketing professional in a large company, finally a becoming a victim of discrimination and non- cooperation! Scared to move to another company where things will be more difficult ! It’s been a month am on leave, on the verge of quitting job with increasing concern about earnings a healthy living! Hope some cure comes up soon .

[roryfulton]

My mother is now 53 she’s was born with RP. She had a horrible childhood and teenage years from people taking advantage of her disability. She has never seen my face my sister nor my brother’s. I’m 31 my sister is 34 and my brother is 22 now. My mom can actually see the world better then sighted people. Not a lie.

[Galen]

Almost 20 years old, was diagnosed like 10ish years ago. I’ve been losing my sight ever since elementary and at first thought my eyes were just a bit worst then everyone else’s and maybe it wouldn’t be a problem as I her older, but was I ever wrong, start of junior high I noticed my eyesight actually deteriorating, and that night vision was getting worst and my eye coordination was turning to shit as well, I use to play hockey and badminton and all sorts of sports, but barely was able to play without losing track of the balls/birdy every 2 seconds, so I faked being sick a lot in gym class to avoid certain activities. As the years went on my vision worsened and I started doing less stuff with friends and family, and stopped a lot of normal activities I woulda done, and the more I steadily started realizing that I am reaching my inevitable future, I grew very unhappy and started not to care abt anything no more.
High school came along and instead of attending school regularly, I jus did drugs, skipped a lot, and almost completely stopped going outside after dark, unless I pretty much was forced to be out in the dark or mustered enough courage to go out with friends, and I did this my entire high school, I hid my disease from all my friends, I even hid it from my family, pretending like everything was okay. Obviously my family knows of my disease because my grandpa has it and is almost completely blind, but they think I have years until it starts to affect me, so I literally lived a double life my entire life, hiding the fact this disease actually affects me tremendously and I have never opened up about it to anyone because I’m to scared they’ll think I’m exaggerating or think I’m lying abt it, and Thas because I have been pestered for years to find a job, to go do something ‘productive with my life’ but I honestly am not some lazy kid who wants to achieve nothing in life, I jus seriously have troubles doing ANYTHING on a daily basis, and know I’m jus a liability to a lot of work places and I feel so lost, to the point where I was tired of living life, not to the point I was suicidal, but seriously mentally exhausted EVERYDAY dealing with this disease that no one even knows affects me everyday. I ended up flunking school, staying in bed pretty much all the time and barely wanting to even see my friends, but after I think forreal hitting rock bottom last year, i self reflected so much and thought abt what path I can go down from this point forward.
So I ended up calling up my grandpa, opening up to him abt it, and telling him how it affects me, and I don’t know what I was scared of, he has the same disease as me so Of course he would be able to relate with me and understand what I’m go through everyday, and he did jus that, we have amazing calls all the time because he lives 6 hrs away from me, and he made me feel more confident in myself. Made me feel confident enough to open up to my mother abt it a few months ago and tell her that I have been going blind already and I don’t have the time like everyone thought so.
I have been going to specialist appointments, and have one next month with a bunch of tests so I can finally see where I’m at with this disease, and maybe find some sort of new treatment Thas been getting worked on.
In jus a few short months, I will be officially graduated, because I been taking my courses the last little bit, and I honestly don’t have a single clue what I’m going to do after that, because I don’t think working is a option, but I’m hopeful for opportunities and am trying my hardest to open up and tell people but I don’t think I’m at that stage yet, it’s to much, and I honestly don’t think I can trust anyone really with the most personal information I hold within me.
My social life as of now is almost completely ruined because we are all getting older, getting cars, getting jobs, and our own houses, but me...I’m stuck in my mothers basement without a plan for the future after finishing my school. They constantly ask me when I’m gon move out, when I’m gon get on with my life and do something with it, and I WANT to tell them all so badly, to tell them I have been thinking about my future, even being so young, Thas all I thought abt. When we was in junior high kicking it, I was already thinking abt the hardships and the saddening future I am gon face real soon and looking for options, I was pretty woke at a young age.
All I wish for now is a definite cure/treatment so I can do all the normal things everyone else is getting to do with their life while I’m stuck not able to do anything while the world moves on without me. I have been keeping to myself and pretty much ruined all my friendships by self sabotaging them to make it easier for me and to not fall in a pit of despair whenever my friends talk abt my future or my life.
They say that money is the root of all evilness, and say that money doesn’t make you happy, and I have heard this throughout my life tenfold and have laughed at it in my head everytime, because money would pretty much completely turn my life, and my families life around completely because we are all jus barely making it by.
Y’all might have thought this really fucken long comment was gon end positively, and end with me finding some inner peace and some opportunities in life to help me reach success, but I’m pretty much completely still stuck and it’s continuing to get worst, BUT what has changed is my dedication and perseverance to actually do something with my life, so I’m not giving up, but I know it just gets harder from this point forward, and I will be trying my hardest to turn it around. Even as tough and hopeless as it seems for me, or even whoever is reading this that can relate in some way, I want y’all to know you’re not alone, because god is always watching, and he will always be there for us in our dark times, you jus can’t give up and have to keep pushing to whatever endeavour you’re striving for, because when you get there, it is going to feel better than ANY drug you’ve taken, going to feel better then anything you’ve ever felt before.
If you made it all the way through, thank you so much, and godbless you all. 🙏🏻🙏🏻

[bevbass]

I have RP which was diagnosed at age 18 and i am now 73. Mine is monocular; left eye only. I still have 10 degrees of pretty good central vision in my left eye; the right is essentially normal and always has been. My RP specialist ophthalmologist at the UW in Seattle has done genetic testing which initially came back negative for the usual genetic culprits, but in subsequent months has revealed several genes which are present after all. This is such marvelous work being done! I know how much monocular RP impacts my functional vision, and were my RP 'normal' and affecting both eyes, i'd see very little now in my old age.

[lexmarmedina]

Hi im lexmar and im 18years old, As well, im suffering with retinisi pigmentosa, i cant read anymore, walk in the dark alone, aicant able to see faces anymore too.I just want to say thank you for inspiring me .

[AlexJohnson-whih]

May lord Jesus heal the RP of all my dear brothers and sisters

[SirGreyCloud]

Been reading a lot of depressing comments. I've got RP, and yeah it's tough, it sucks, dark times, etc. But holding out hope for a cure is no way to live. Maybe one will come, maybe not. Best not to linger on it. Got to adapt. Get a cane, it's an adjustment but a huge quality of life improvement. Miss sports? Get into blind sports like goal ball. Don't let this shit beat you, it's just a wall you've got to work around. It only sucks because everybody tells you it sucks, but its not a bad life. You just live differently. I meet other folks with RP who are old and bitter. I don't want to end up like that, so I won't. It's a journey, that's for sure. Not easy. But getting down about it doesn't change anything.

[joyannespeja]

I hope there will be also a clinical trial here in the Philippines.

[luizguilherme]

My father has RP since I was born.
I grew up with him with this disease All my siblings had to adapt to provide him a better environment because he wasn’t able to accepting his own condition. Over the year his vision transgressed in a grade from non significant to severe losses. He can’t see anything more and I only wish he would become able to see me again to give a hug saying we did dad we did! I have 38 and my dad 72 years.

[siomai]

Im currently 26 years old but I discovered I have RP only when I was 23. In highschool playing volleyball was so tough and I pretended I was sick just not to play. My past family doctor was an incompetent and instead of saying that I should check my eyes, he said that maybe im stupid. Anyway it was also tough at night when I couldnt see well and I wasnt sure if it was just me or I could see like everyone else.

Then I decided to take this eyesight visit at age 23, discovered I have RP and cried at home. It explained everything... I do yearly tests and they tell me my eyesight didnt get worse, but I hardly doubt it. I cant read manga anymore or it:s very hard, also cant tell my drawings on paper anymore.

Im trying to enjoy everyday and my sight until ir lasts, but it's tough. One positive note is that I get support from the government. I wont reread this before posting cuz my eyes already hurt

[gag]

My grandad had RP and he was the happiest most stable person i knew. He always highly recommend getting a guide dog.

[eshamims]

I'm 39 with RP ..never have I heard of an injection..physically I appear normal..but my vision is horrible..this is my first time ever searching any social network about my disease because I guess I was ashamed..but I'm not anymore and want to learn as much as possible

[sumanths]

Hi! Inspite of millions having RP why till now we do not have any remedy or solution for this and still the research is going on for years together and no specific medicine is approved by WHO. I on behalf of all RP persons deeply request WHO to look into this and provide a better solution and open every one's vison fully or at least partially. I personally know how tough it is. Inspite of our modern day technology really cant understand and helpless without any solution for this.Thanks.

[mcbk]

I've been suffering with RP since I was a kid. Every time I think about it, I just think of why do i have this illness? Nobody in my family has it but why me? If one thing i wish i could have is just a pair of normal eyes. I am fortunate that i have a loving family, friends and husband to rely on throughout my life but it sucks to always rely on someone.

[shanemandrell]

As someone with RP as well I understand this situation. My therapy to get through it is music. My vision is still decent but terrible. If I drop certain small objects I lose track of easily and have a hard time finding sometimes due to the loss. I can still play guitar and piano which hopefully that carries over and I can still do these things if or when I lose my sight. Music works for me when life gets me down because of it. It's not easy dealing with RP and can turn things that should be fun into not so fun challenges. Not all RP patients go blind. Plenty just become more visually impaired than others and some might not even have trouble until they reach 40's or 50's. I'm 30 and it's definitely challenging but for me it's mainly the almost complete night blindness, the somewhat color blindness, if you can even call it that, and anywhere that isn't really good lighting. So I try to stay positive and just thank God I have the sight I do and let the music do the rest.

[samfeiner]

At 77 I have RP for 30 years. I am slow in public. However I always manage. No complaints. Life is beautiful for me. Baruch hasem.

[purushottamtiwari]

how many years will take completed jcyte for stem cells treatment rp