Rosie's Story: Treating Retinitis Pigmentosa
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- Опубликовано: 12 окт 2020
- 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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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 .
Me face same problem bro I'm also waiting
Same here bro . I'm 26 & my vision is also degrading
Dear, sorry to hear that you can try on oral activated stem cell therapy, if u interested can let me know ya
@@BJYeap yes I am interested , how can I contact you on the matter?
Same problem i am facung..since at the age of 8-10 ...and i feel unhappy ..uncomfortable..please give me suggestion...that how can i get well soon....
I wish RP treatments get fda approved and change millions of lives ❤
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.
Hey Big Brothers please share the result and his health after treatment
Follow up ?? How did it go
Hope it went well!!! Let us know how it went !!
Brother I am also suffering from this disease please share me the details of your friend and I want to talk to you send me your number
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.
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. 🙏🏻🙏🏻
I understand how you feel. It took a lot to write what you wrote. This is a good step for anyone with RP is to admit it. I went through a lot of the same things I am now 68 years old and have an hour P isn’t all that great but It’s not as hard as you think to live with. Remember to change the things you can change and try not to dwell on the things you cannot. You would be surprised how many friends would help you out once you admit and except that you’ve lost your vision also, protect your hearing the best you can. I wasn’t as good at doing that as I should’ve and have a little hearing loss and it is very important to keep that. Work physical and verbally and you’ll find that you can do a lot of things. Good luck.
Bro I'm 24 and my situation is almost similar thinking to commit suicide
God power 🙏🏻💫
@@M.BilalSaleem007 my daughter also suffering from RP
My heart is with you. You're an Amazing strong human being and I appreciate your endearing story. I will keep you in my thoughts and send you love and positive energy.
Me to i pray no one became blind
Wdym?
Learn english😂
I pray every day that this will work
You also have rp?
@@hugoquintero9189 yes I have about 2% in the left and 10% in the right eye left of usable vision
@@lilmissunshine83 thats bad i can still see but kind of blur im 35 it sucks
@@hugoquintero9189 it does suck but there’s nothing you can do about it right now. Try to stay positive and just have faith the stem cells trials become FDA approved for treatment. Here’s how I try to think about it, you’ve always had it, you were born with it, and the only difference now is there’s a name to put with the bad vision. Be great full for what you can still see.
@@lilmissunshine83 yes im grate full rarher have the vision i have than none just it sucked growing up with rp being a teen not dating much or ever having a gf due to my poor night vision
i have RP since birth. Half of my life ive never known what its like to see at night. i pray I get to see the world like a normal person does
I also have rp since birth. I'm 23 and fully night blind since birth. I see too many flashes in my peripheral vision line plus too many floaters and it's always there. Day vision is also affecting but none of my family have this disease. Is there any cure? I don't want to lose my eyesight.
@@crazykatedits me too i am in the same situatioon as you i am 20 years old
@@eyexfadingx422 let's hope we will get cure of it soon 😂 you know no one is marrying me because of this disease. They are like ugh she is having some major eye disease we are not going to take her for our son what if she loses all of her eyesight what if our grandchildren's also have it etc etc.
@@crazykatedits how old are u ?
@@eyexfadingx422 23😅
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 .
Good luck to you and I guess in a way count yourself lucky as you’ve kept your vision longer than many. Hope it all works out for you. Stay strong friend
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.
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.
I have also rp.from bangladesh
Are you married?
Your partner are understand your problem?
Where are from India or America
Good but horrible
I also have rp. I had a baby at 41 and it got worse.. now I lost my husband. It's a real struggle
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 .
May lord Jesus heal the RP of all my dear brothers and sisters
Please lord!
My grandad had RP and he was the happiest most stable person i knew. He always highly recommend getting a guide dog.
I hope there will be also a clinical trial here in the Philippines.
i hope too
Hello! Fellow pinay who also have rp. :'(
Hey guys how’s your vision now? Im 46 and also have rp
My right eye getting worst..because of this illness...
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
You are use “ macula lux forte “ multivitamin
Right there with you. Also was a bit of avoidance of the issue but it’s getting to where I can’t ignore it. Always hoped something magical would come about but seems that we’re still talking stem cells and some rumblings of poor quality implants. Both of which are ridiculously expensive. Good luck to you though and stay strong friend, we’ll all get this figured out 😊
Thank you
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.
No enough effort is put into the matter , it is a sad reality , I am 30 now , Can not do a damn thing alone , I do not feel comfortable in areas full of people , lack of awarness , Cant Drive a car , Can see at night , I am getting so depressed , but still got the hope ,,,,,,
Thank you for sharing that. I too am dealing with RP. And I have been dealing with RP since I was 33 years old. I’ve also been referred to a gene specialist. So thank you for this video. GTherr is hope. God bless. Oh before I forget, did it cost anything? If so, how much?
how many years will take completed jcyte for stem cells treatment rp
diagnosed at an early age of 9 years old. Now im 40 still have some vision left.
I have the same problem which treatment we have to take for this and where will I get it?
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.
Wow duude I'm 33 and have rp with terrible night blindness and tunnel vision and am a professional musician as well. I can still drive during the day but I always have to leave my car overnight at gigs and Uber home or ride with band members. Music saved my life though I don't know where id be without it. God bless you I hope we get our eyes fixed someday.
@@DaveWalshMusic 🙏🙏🙏 Hopefully one day. until then I'll continue to focus on music. I'll check out your music if it's on here and if not just let me know when I can find it. My RUclips channel is The Main Hurricane Shane if you wanna check mine out. I'll be dropping better stuff soon. Stay Blessed.
@@shanemandrell9116 I'll subscribe to yours. Btw have you done a swab kit for your specific strain yet? You should be able to get one at your local eye doctor or order one online so you can know when a treatment is available. Some strains of rp are already treatable. Mine isn't unfortunately. I'm thinking about going back to India for eye care I have no insurance in the usa.
So positive! I love it! Thank you for sharing your story.
my mom have RP she's 36 years old 'till now I'm still hoping that she'll be able to see someday..
My mother has also same problem..she is 57 years old...I want to make her happiness in remaining life...what I need to do ?
@@kapilagrawal5622 She still can see ??
Im from Philippines, I have, Retinitis Pegmintosa, hoping to restore my vesion , God 🙏 you all
I’m blind almost ten years… please tell me the cost of prescription..
I also have RP with severe depression I’m not able to drive anymore and do all the things I’ve used tp do anymore. God said we are here on earth temporarily and when we get to HEAVEN WE WILL HAVE A NEW BODY PERFECT with NO PAIN OR SUFFERING ANYMORE THANK YOU JESUS FOR YOUR SACRIFICE FOR ALL.🙌🏾🙏🏽 I can’t wait for that day🙌🏾💞with a new body and to be with our savior Jesus Christ.
when is the phase 3?
What about the treatment costs?
Can someone tell me what injection this is? i have only a little vision in my right eye. i am 26 years old and i am almost blind, i have retinitis pigmentosa
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.
I am from India I also suffering from RP since 17years
How can I get in touch with this institution?
My mom has RP and her vision is getting worse wants to know about gene therapy, can anyone has idea about where to start for gene therapy
I'm from Pakistan and how can I get treatment for Retinitis Pigmentosa?
I am 19 year old and I am RP patient please share with me any treatment please I come to California for treatment
Please is there any way I can get help here in Nigeria? I got diagnosed a year ago and I'm in my late 30s
Greetings from Chicago. I take three eggs one banana one drop of vanilla extract with a pinch of cocoa I blended everyday. It is real protein that you need to keep this under control and not getting worse I also take zeaxanthin I take vitamin A zinc and copper and I take eye supplement
Same as me!
My soon have RP he’s 12 years old what can i do help me im so lots i don’t now what to do
Hello good day i also diagnosed retinatis pigmentosa and until now,🤢may i ask if that injection treatment is available in the Philippines and how much is the cost please help i need to know please,🙏🙏🙏
Hi ..im 46 and was diagnosed with RP... My vision deteriorating.... I thought before that it was only nearsightedness but i wonder why that as the years goes by, since my elementary grades my vision is getting worst....have pity on me.... PLEASE HELP ME UP WITH THIS RP
Good day. Im from Phillippines and i was diagnos with same as yours, as well as my brother too. It is so hard for both of us because treatment is not yet available here but as soon as it is available still we cannot afford the treatment. I hope you can help me
Affording is too difficult, expensive as hell
We are in same situation with you. I have RP and my sister too. Hopefully it will be cured on a good way and freely.
Greetings from Chicago. What I do is I take three eggs put them in a blender with one banana one drop of vanilla extract with real cocoa no sugar I blend it I drink it and that is called complete protein. I take zeaxanthin with copper and zinc. I also take vitamin supplements for the eyes. With the doctors failed to tell us is that we need real protein to help keep it stable. And the eggs are complete protein that we need every day very easy I've had RP for five years and mine has been stabilized because of what I take
@@shellyfilippi what is your seeing rate?
@@aysenurhalc6407 I don't know it is it is gone my peripheral vision is gone all the way around. It doesn't make any difference if you want to take my advice you take it if you don't then don't take it there's no cure for it but there is a way to maintain it it's up to you
Lord jesus please come to heal us you are the only hope
Are there any current studies going on that I could take part in. I am now 50 and was diagnosed when I was about 13. I have about 5 degrees of central vision left but in the last year my vision has gotten a lot worse as it seems that I am looking through a fog. I had cateract surgery a few years ago that helped but my vision seems to be degenerating.
God bless you. May your condition improve completely.
Get a genetic test, maybe you'll qualify for gene therapy since there is one already available called Luxturna
Vision tend to get worse months after a cataract surgery due to proteins build up on the new artificial lens , it is recommended to undergo a Laser therapy to remove them which can largely improve your overall vision .
@@Rajivrocks-Ltd. can i know about this treatment
how can we be part of these trials if we live abroad?
I 31 yr and I also suffring rp
nw my vision only 10 percét wht should I do
Is it true that it can be cured now?
Please give details of the remedy mentioned in the video as I am also so surprising from retinitis pigmentosa since 20 years
Same case. Details needed here too
Mujhe bhi yhi problem h mne prkash netralay jaipur me bat ki h unhone bola h ki jad se to khtm nhi kr skte but slow down zrur kr skte h... Aap RUclips pe search krke puri details dekh skte ho.. Prkash netralay k name se chenal h
Had any one did staim cells treatment
Hi ! Hope and wish there could be doctors watching our comments and advise any remedy for all RP affected persons and give any temporary or permanent solution to get back their vision partly or fully and see their beloved parents and their children and also their own face in the mirror. Please advise.Thanks.
Am from INDIA how can i have that injection please someone help me .
message, I have retinitis pigmentosa and live in California and need help getting treatment., 11:07PM, Received from Dundon
as far i know this treatment is available in USA and is only for USA citizens .
i am also became blind due to R.P.
i write here using screen reader softwares and am 44 years old got blind abt 7years ago .
i am afghan refugee in Iran .
you should be more thankfull of God that are not refugees and only have R.P. and are at least have a safe country and has no worriness to be returned back suddenly to a country full of dangers for yourself and your kids ... i am fother of 5kids ...
O God ....thank you
My brother and i both have RP too. Undeec it is so hard. I am looking for someone who could help us please. I am from Philippines we, we cannot afford to have the procedure. Is there anyone here can help us?
Greetings from Chicago. I take 3 raw eggs a day with one banana a drop of vanilla extract with one pinch of Coco real Coco with no sugar blend it. For supplements I take zeaxanthin vitamin a copper zinc and an eye supplement. I have retinitis Pigmentosa and since I've been doing this I have been keeping it to where it's not getting any worse. Blend the eggs with the banana in the blender do it twice a day it is called real protein
Dear you can try on activated oral stem cell, which it had helped a lot of ppl.if u interested to know more please me know ya
@@BJYeapcan you explain please ? More details?
Everybody is asking for help why can you not answer questions about it.
If this works we need to know
hi, i m from nepal and suffering with same case😭
What about stem cell therapy
Does any one try it
I’m 31 now and I have RP since a baby but my vision loss started in my early 20s I lost my driver license at at 28 and since then I’ve been sad and depressed about it. Hope there is a cure for it so HELP US GOD!
Can anybody tell contact this CIRM 3:17
I am ready for clinucal trial
Can anyone tell me how to contact CIRM
when is the phase 3
My sister is also suffering from RT may Allah azzawajal cure all of us
Is it available for public at the moment? i stoped my study at university due to my vision gotten worse and made me unable to wread without help from digital magnifier either from phone/ the digital magnifier from medical perposes, . i've been suffering from the deseast since 2nd grade of elementry school, and i don't know whats the name of the desest until i ran to a doctor that i met recently and he said that i'm sufferin from reitiniti pgmentosa, while a couple of doctors before just said low vision or nural issue witht he eye, there fore i don't really know what to look up for from the internet for any threatment at all until recently, i hope it will be available as soon as posibe if it's not right now,
What was the early symtoms? Can you please tell me..
@@edufy8711 night blindness, flashes, floaters, loss of peripheral vision. I'm also suffering from this disease
i have it
Sir or madam, please help me. Me only see day time, night time or low vision cannot see the picture my age 25
I'm 26.. same issue
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.
Always there is a hope the treatment of jcell will be our hope after the Clements of God (Allah)
Prolonged water fasting stimulates stem cell activity, could this not apply here with the benefits of autophagy. It's just something I'm curious about as my dear mum has this.
Please tell me it's treatment procedure..it's very urgent... Please help
Stem cell therapy, that is done by injecting cells in your retina, till now I don't know if it's promising.
Prkash netralay name se chenal h you tube pe use dikhiye usme btaya h eska solution
Take three eggs put them in a blender with one drop of vanilla extract a pinch of real cocoa no no-sugar drink it twice a day. Blend it it is complete protein that you need you have to have a high protein and a diet for it to be stabilized I do this every day and my mine has been stabilized for five years the doctors failed to tell us
zeaxanthin take zinc and copper take eye supplements I've had retinitis Pigmentosa and I've been using this and it has been stabilized in my condition greetings from Chicago
@@farhanulhoqueprottoy6635 i want talk about stem cells therepy with you how can i contact with you
@@purushottamtiwari6186 you can contact me through Facebook if you have, the name given here in youtube, search with the same keyword for my name Brother
I wish this kind of injection comes to india i am a rp patient diagnosed at age of 11 i am 12 right now i am very worried :(
Şuan nasılsın
Madam now are you visible to you mam
Hiw its is any improvement
Plzzz tell me mam
I also suffering from RP
Plzz comment me mam Plzz 🙏🙏
I would like to have this treatment . How could I get this ?
Google jCyte and apply to join their Phase 3 clinical trial
I'm RP patient my doctor suggest (becomin plus) tablet is really help to me. This tablet stop rp
I am 26 and now i diagnosed with RP ..I have taken admission in MBA this year i don't know if i would be able to complete my education or not?? After how much time we lost our eyesight .please if anyone knows kindly help..i am from india.
Don’t worry dear. Be positive. This is very slow process . It may takes years or some time decades also to progress. It totally depends on person to person. You continue your studies. Who knows in your case it may not progress also. Be positive. Keep up the hopes.
Soon may get the treatment also. You are still very young. At younger age this progress very slow. Be happy be positive stay healthy and stay active. Let’s see .
@@sagar-kw7qr thank you so much for giving me hope ...i was feeling hopeless since i heard and research this disease...may god bless you too for spreading positivity🙏
@@sagar-kw7qr that black day was on 5th july when i went to the dr. I have been referred to shankar netralaya chennai or delhi aiims..i have also consulted 3 doctors to prove my diagnosis wrong...but the tests were not available in my city..btw where are you from?
@@shivangisharma9693 what type of tests you had gone through to confirm this .
I have eyesight and I’m kid and I’m not going blind
Is this true ?
from Chicago take three eggs with one banana with one drop of vanilla extract with one pinch of real cocoa blend it and drink it twice a day take zeaxanthin take zinc and copper and an eye vitamin and you will be fine it will maintain it
Hi Guys i am from
india i have RP by birth i also look for treatment do we all can create a some kind of group somewhere
I already lost hope
So many promises not enough results
I also have RP is this legit?
हिंदी में वीडियो बनाओ और ढंग का प्रॉपर इलाज बताओ
I have RP since I was little now being in my 40"s getting worse
At what age you noticed vision problem? How is you vision now? I have a child just diognsed.
I’m a singer born half blind with RP and I’m a twin
OMG, Amanda from ANTM 2 had this same degenerative eye disease. Hopefully Amanda has found a cure.
Can we make a group for the people who are suffering from this disease. Please help each other and we can communicate about the clinical trial. My brother is also having rp
My Dad has it
@@trishitagiri5377 is he undergoing any treatment now?
@@nithyak8450 Doc said there's no treatment for this. The Doc explained his condition like he can neither get blind nor he can see clearly.
@@trishitagiri5377 okay. We can hope for some treatment in future soon. I have seen jcyte is conducting a phase 3 trial. Let's hope for the best🙂
@@nithyak8450 who?
Plzz help my son and dattor night blandnees problem l am in India plazz help me
greetings from Chicago I've had retinitis Pigmentosa for 5 years now. Please take three eggs with one banana one drop of vanilla extract with real cocoa with no sugar blend it. Then drink it. Then take copper zinc zeaxanthin and an eye supplement everyday
Multivitamins and minerals tablet
My mom is having RP problem...and nowadays she is lossing her vision more frequently left eye is completely blurr and she is some what managing with her right eye....if there is any treatment plz let me know...know she is 44 years old
There is brother, Contact GIOSTER
@@farhanulhoqueprottoy6635 stem cell therepy se rp kitna percent thik hoga
@@punamthakur671 maine baat ki thi, 6lacs rupee mange the, aap baat karke dekhiye zara.. Google se number mil jayega aapko
@@farhanulhoqueprottoy6635 guaranty dete hai kya
@@punamthakur671 baat karke dekh sakte hai.. Mujhe to bataya hai promising, lekin thodi jaj partal kar hi lena chahiye, waise aap kon si state se ho?
This is fucked up I can’t tell if this is good or bad due to the fact that there is no dislike feature RUclips ruined this trust
OK , What is the name of the treatment you received?
What was injected into your eye.?
Hello! My Daughter have RP problem she is now 17 years old, she is suffering RP but we are in India. I need some explanation and e mail id to contact doctor. Please help me any one. Thanks.
I know a doctor who can cure your daughter he my daughter with herbs after trying so many drugs and non worked but his herbs cured her though I was skeptical about it at first but it worked and I'm forever grateful to him
@@lanapatche1778 please contact me on ig i want to try it out !
@@nonenone6410 kindly drop your contact info so I can forward it to the doctor
@@lanapatche1778 thomas rodier 96 instagram
I have rp at 19 contact me please so we can figure something out together !
I am suffering with retinitis pigmentosa problem of eye it can be cured in future please help
Yes it can be cured my daughter was cured of it
@@lanapatche1778 Plzzz share more information .Plzzz Plzzz plzzz
@@jashan4769 my daughter was cured with herbs which was prepared by the doctor though I was skeptical about it at first but it worked and I'm forever grateful to him for restoring my daughter sight
@@jashan4769 he can also help you
@@lanapatche1778 Could you Plzzz give me the information about that doctor and from where he belongs?
My sister is suffering from RP diseases since 10 years and only 20℅vision left, if any treatment please inform us, and when will be treatment come in india
I know a doctor who can cure you he cured my daughter with herbs after trying so many drugs and non worked but his herbs cured her though I was skeptical about it at first but it worked and I'm forever grateful to him he can also help you
@@lanapatche1778 why you comment same lines in all channel??
better you write doctor name share detail
@@lanapatche1778 Stop spreading false hope. RP has no cure. If it did, it would be making national headlines. If your story were true, you would just drop the doctor's name in the comments instead of trying to get everyone's personal information.
@@lanapatche1778 tell me the name of herb please
@@reenujan1466 it was prepared and sent to me by the doctor
I also suffering from RP
Anybody plz tell me is there any
100%treatment Plzzz tell me🙏🙏🙏🙏🙏🙏🙏🙏🙏🙏
I'm also waiting
Sorry but there are no treatments currently
This is cure able????
Here is any teenager RP
A.o A everyone... I m also RP patient from Pakistan.. 25 years of age and now facing lots of difficulties regarding this issue... Do u plz help me to suggest any treatment fr this issue... I m a working lady.. I need to move socially nd feel embraced when I can't do things in good way... I m losing my temperament and becoming more stressed day by day...plz give me some response
I am 53 and can no longer drive. My brother also has this. Try to be positive. Focus on the things the you CAN do, not all those that you can't. My brother is a dentist, and earns 7 figures, I am in finance and also earn 7 figures. Others have had it worse than you and I. Do the best you can and God will open doors for you.
Hum akele ngi hai dosto aise bohot sare log hai india mein iska ilaj nhi hai jo kar rahai wo froud hai kisi chakkar nein naa pade mujhe bhi rp hai. Par mein foran jake ilaj nhi kra sakta mera india mein ilaj ka bhi buget nhi hai.
Aapke symptoms kya h? Myopia bhi h?
Hi contact no please
Yes there is many peoples but still no any treatment for this decease. I am also suffering with this (25)
@@CarTalks_with_me what symptoms u experienced that lead to diagnosis?
@@shubhisingh3663 Tunnel vision and low visibility in Dim lights🤕
Whats the cost of the treatment.?
Do you also have rp ? Please contact me so we can look for threatment together
Instagram thomas rodier 96
@@nonenone6410 yes i too have Rp, but i dnt hav instjgram
My mom is also having rp. She is 50 now. Please help
@@simranarora6297 what r her symptoms n which age she got diagnosed
I have the same thing I'm 15 and I also have nygstagmust