As an RP patiant it is interesting to learn and see what the doctors see. I was diagnosed officially when i was 10 or so but I've been legally blind since 3. My half brother also has RP so its believed we have an X inherited type. While I haven't noticed any color degeneration, my visual acuity has never been good and I am colorblind (Reds, purples) and have issues with color separation (yellow on white, etc).
I have Rp too and I am 19 had it since birth and just recently my doctor said she didn't know if I'll have my vision in 10 years at first 5 years ago she said I'd have until I was 60/70 but hearing I might become blind before I get 30 is killing and I am feeling so miserable ever since
I m also 19 and last month I came to know that I am also affected by this Rp desease I am very afraid right now because I came to know that it has no cure
Yes it sucks, you just got diagnosed? you know give it time I've kind of excepted it but it still gets me now and then. what still gives me hope is how fast the medical field is advancing in such a short time. This is what someone said to me in the comments on one of these kinds of video's "You know you might become blind but that surely won't be for long" if you understand what he means by that. time will tell what will happen no need to worry about it now it will only slow you down. there is allot of research being done on RP so thats a good thing. also I said it before but focus on your life right now don't think about what might happen in the future just try to really do something with your life knowing what you know now should really motivate you. I hope this helped you even a tiny bit. And don't feel afraid at all to talk to me about these kinds of things. I've know what I know now for a long time so I can help you. :)
@@jameshay2585 Mostly stable says my specialist. Although I do notice a lot of jittering in my vision but that is due to my Nystagmus. I've had a problem since 1, 1.5 years that text is kind of in and out of focus like a camera adjusting its lens to get stuff in focus. This is my Nystagmus in combination with lost vision in my Macula. My doctor finds it strange because my peripheral vision is decent when she looks at the scans of my eyes. The outer part of the retina is still pretty thick. But my macula is strangely degraded, more then that is normal in RP. Because in RP it is supposed to go from the outside inwards. But we'll see.
@@Rajivrocks-Ltd. So is it possible to have it and not go completely blind or is blind less guaranteed eventually. My gf has sector retinitis pigmentosa so I don't know if that changes things
😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭 I just watched a RUclips video and a girl explained that disease in the video. She has Retinitis Pigmentosa.
first of all, wonderful presentation that you just shared. I lost my vision at age 26 due to RP and underwnet cataract surgery in 1995 having implant optical lens. the left lens is out of place since then making my left eye moving away from looking straight. will it help if I will have another implant optical lens surgery?
I'm an intern optometrist. I saw dark pigments on the patient's optic disc, with optic disc pallor. This was only in OS. VA was 6/18, but BCVA was 6/6. What could it possibly be?
is it possible for a patient to have one eye progress faster than another? aka one eye has less perepheral vision and can't see as well in the dark than the other?
Condell Flor hi, I have RT and yes my right eye is way worse than my left eye. I'm almost totally blind in my right eye, but can still see pretty well out of my left. I really hope it helps if you have any other questions I have a Facebook page called Fight4Sight where people who have RP and their family and loved ones can get together and communicate about these sort of things. As well as we can watch out for any treatments or cures better upcoming or new.
My Grandmother material had it. Some of her Aunts sisters. My mother did not nor her siblings. Nor her grandchildren and none of her grandchildrens childrens. Dose this mean it's gone from our maternal line?
@@shanewhite352 imagination? You clearly need to research more about this or just lack brain cells I'm not an eye doctor but if laser treatment such LASIK or PK was an option everyone with rp would get it but if the doctor Says laser treatment won't do anything then it's not gonna do anything
Graci Meza early on it might be detectable in only one eye but as the disease progress both eyes will be effected although not necessarily equally severe
As an RP patiant it is interesting to learn and see what the doctors see. I was diagnosed officially when i was 10 or so but I've been legally blind since 3. My half brother also has RP so its believed we have an X inherited type. While I haven't noticed any color degeneration, my visual acuity has never been good and I am colorblind (Reds, purples) and have issues with color separation (yellow on white, etc).
I have Rp too and I am 19 had it since birth and just recently my doctor said she didn't know if I'll have my vision in 10 years at first 5 years ago she said I'd have until I was 60/70 but hearing I might become blind before I get 30 is killing and I am feeling so miserable ever since
I m also 19 and last month I came to know that I am also affected by this Rp desease I am very afraid right now because I came to know that it has no cure
Yes it sucks, you just got diagnosed? you know give it time I've kind of excepted it but it still gets me now and then. what still gives me hope is how fast the medical field is advancing in such a short time. This is what someone said to me in the comments on one of these kinds of video's "You know you might become blind but that surely won't be for long" if you understand what he means by that. time will tell what will happen no need to worry about it now it will only slow you down. there is allot of research being done on RP so thats a good thing. also I said it before but focus on your life right now don't think about what might happen in the future just try to really do something with your life knowing what you know now should really motivate you. I hope this helped you even a tiny bit. And don't feel afraid at all to talk to me about these kinds of things. I've know what I know now for a long time so I can help you. :)
@@Rajivrocks-Ltd. How has it progressed?
@@jameshay2585 Mostly stable says my specialist. Although I do notice a lot of jittering in my vision but that is due to my Nystagmus. I've had a problem since 1, 1.5 years that text is kind of in and out of focus like a camera adjusting its lens to get stuff in focus. This is my Nystagmus in combination with lost vision in my Macula. My doctor finds it strange because my peripheral vision is decent when she looks at the scans of my eyes. The outer part of the retina is still pretty thick. But my macula is strangely degraded, more then that is normal in RP. Because in RP it is supposed to go from the outside inwards. But we'll see.
@@Rajivrocks-Ltd. So is it possible to have it and not go completely blind or is blind less guaranteed eventually. My gf has sector retinitis pigmentosa so I don't know if that changes things
Very helpful! Thank you so much!
NICE .
SIMPLY AND SUPERB.
THANK Q SO MUCH SIR
😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭
I just watched a RUclips video and a girl explained that disease in the video. She has Retinitis Pigmentosa.
Thank u very much 👏 you're awesome
VERY SIMPLE AND SUPERB ! I LOVE IT !
Thanks a lot !!
first of all, wonderful presentation that you just shared. I lost my vision at age 26 due to RP and underwnet cataract surgery in 1995 having implant optical lens. the left lens is out of place since then making my left eye moving away from looking straight. will it help if I will have another implant optical lens surgery?
why is it called retinitis? is there an inflammation or just a misnomer?
Misnomer, there is no actual inflammation. It is a genetically mediated degenerative disease
I'm an intern optometrist. I saw dark pigments on the patient's optic disc, with optic disc pallor. This was only in OS.
VA was 6/18, but BCVA was 6/6.
What could it possibly be?
Splinter Haemorrhage with Glaucomatous optic atrophy, but vision is good, needs perimetry to confirm central vision.
great video I have Rp and now I have better understanding about my condition.
is it possible for a patient to have one eye progress faster than another? aka one eye has less perepheral vision and can't see as well in the dark than the other?
Condell Flor hi, I have RT and yes my right eye is way worse than my left eye. I'm almost totally blind in my right eye, but can still see pretty well out of my left. I really hope it helps if you have any other questions I have a Facebook page called Fight4Sight where people who have RP and their family and loved ones can get together and communicate about these sort of things. As well as we can watch out for any treatments or cures better upcoming or new.
My Grandmother material had it. Some of her Aunts sisters. My mother did not nor her siblings. Nor her grandchildren and none of her grandchildrens childrens. Dose this mean it's gone from our maternal line?
do you have diplopia with RP i have all of the symptoms you described but with double vision in both eyes
i have diplopia in both eyes can this is rp please tell mee
I don't understand why it cannot be wiped off with laser as we wipe tattoos?
Because it's genetics you can't wipe genes
@@PDeathDealers gentics --> make pigments
laser --> removes pigments
you --> have no imagination/critical thinking
@@shanewhite352 imagination? You clearly need to research more about this or just lack brain cells I'm not an eye doctor but if laser treatment such LASIK or PK was an option everyone with rp would get it but if the doctor Says laser treatment won't do anything then it's not gonna do anything
@@shanewhite352 I think atm laser is risky with this disease, apparently gene therapy might be the way forward.
What is AR and AD written in brackets
Autosomal recessive/ dominant inheritance patterns probably.
so wt can we do wiyh Rp?
is inflammation the cause of retinitis pigmentosa?
i am rp the doctors dont tell u everthing i want surgery done on my ritina they say it want help
hello
Can RP be in only one eye?
Graci Meza early on it might be detectable in only one eye but as the disease progress both eyes will be effected although not necessarily equally severe
करोली सरकार कानपुर मे लोग एक दिन मे ठीक हो रहे है