I'm Losing My Vision - What is Retinitis Pigmentosa?
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- Опубліковано 21 бер 2020
- I’m legally blind mainly due to an eye condition called Retinitis Pigmentosa or RP for short. It’s a condition that affects 1 of every 4,000 people and it causes the retina to degrade over time resulting in gradual vision loss. Here I’ll do my best to explain what RP is and how I experience it through my eyes. If you’re interested in learning more about the research into finding a treatment and possible cure for RP please check out the organization Foundation Fighting Blindness and donate to them if you wish to donate.
Link to the Foundation Fighting Blindness
www.fightingblindness.org
Links to my UA-cam friends shouted out in this video.
The Blind Life
/ @theblindlife
Blind To Billionaire
/ @blindtobillionaire
Cayla With A C
/ @caylawithac
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I have macular drusenosis, losing my central vision, my peripheral vision is still intact, night vision is awful, my right eye has progressed faster and my left is doing all the heavy lifting. No cure for me either. Thanks for your video
That’s actually one eye condition I haven’t heard of at the moment. Will have to look it up to educate myself on it. I’m hoping that you’re getting any sort of help to assist you in the adapting of the vision loss. It can be a bit tough at times, but having a support system is very helpful.
@@JuanAlcazar thanks for your reply Juan. it’s similar to early onset dry macular degeneration. I have one of the best ophthalmologist in Australia, and she said she had only seen one other person with similar drusen to mine. I’m also on the list as a research subject at Centre for Eye Research Australia, so Even though there’s no cure for me, I might be useful to help find a treatment for others in the future.
My husband have the same disease and watching this video I understand more when he tries to explain what he can see, I wish I can do something for him, I feel so sorry for this people not being able to see the earth beauty , but I have hope they will find a cure !
While I can only speak for myself and what I am able to see, I'm glad that the video has helped you understand your husband's vision better. Thank you so much for letting me know about that because this is why I like putting out the videos that I do.
JC5 Productions Thank you for being so brave, he got the gene therapy done around a year and half ago and has said that it helped notice some things he wasn’t seeing before, hopefully it helps by been improved in the future and I hope God help you also to find sponsor if you haven’t yet so they can help you too, have a wonderful day! Many blessings !
Vplease tell me Sister where your husband made the gene therapy my name is Muhammad Abdul Hameed I too have rp and I'm just 18
Thanks for sharing your experience. I also have RP. It's been a hard shift for me because all my life I have done extreme sports such as motocross racing, skateboarding and downhill mountain biking. I had to step back from that. One of the hardest parts was seeing my friends continuing to do those things and not being able to join in anymore. I've switched to Flatland BMX, which can be done with low vision. I can definitely relate to your story.
I can imagine how tough that can be to know your friends are still doing what you used to do. Although I’m glad to hear that you’re still enjoying what you’re doing. With some adjustments it’s interesting that nearly everything can be adaptive.
I was diagnosed about 10 years ago and have been resisting ever since! I have my first traiing session this week, wish me luck.
Hey, best of luck with your training. I know it can be tough to get to that acceptance phase, especially when you have remaining vision. Everyone goes at their own pace though, so here’s hoping that training works out well for you.
Hey, is there any improvement? Tell me if there are some gadgets helpful in this?
I hope you will see this. I looked up RP, and thank God you showed up. I’m 67, and never knew why I couldn’t drive at night. I’ve had RP for 10 years now. I had both cataracts removed. My Mom had Macular Degeneration & was legally blind after 15 years of being diagnosed. I’ve not been out much since March, due to the Covid. I have a history of cancer & other health issues. My daughter took me to two Dr. appointments. I go to Foot Doctor 35 miles away, but hadn’t been in months. I needed a cortisone shot, so bit the bullet today and drove there. I’ve never been more scared in my life. I could see, but when I met a car, it looked like two, side by side. I need to see my eye Dr. as soon as I can find someone to take me. Is this a common symptom to see like I did? I’d appreciate any advice I can get. Thank you.
I’m sorry to hear that things are very difficult for you during these times. Hoping that all this pandemic business is behind us all soon. I haven’t had an incident where I see double like that, but then again I only have one type of RP and there’s so many that it’s likely that seeing double like that might be a symptom of one of them. I wouldn’t know however, so I would see if your specialist can give you some sort of answers. Do take care of yourself.
Omg the white crescent moons!!! Perfect description! Great video. Appreciate all that you do. I'm struggling and scared about my diagnosis right now. Sending love and positive vibes to you. Keep doing what you do. Brilliant channel 💜
Ah yes, those crescent moons in my field of view. It was quite a task in simulating those onscreen, but I really wanted to include those since most people might not even know what they would look like.
Where you are from?
I am 52 and have rp love this vid you described this disease perfectly. Everything u said im going thru. Ive also lost sight in one eye..this is a very difficult disease that only ppl who suffer with it understand the pain and difficulties of daily living...thx for sharing
Thank you. It’s a tough condition to explain since there’s so many types of it and everyone’s experience is unique, so I’m glad that a lot of what I mentioned was relatable. It does take a lot of time to get used to it when you are almost constantly losing some amount of vision.
Great video man! 👍🏼
Thanks Justin. I'm just glad I finally posted this video lol.
I have RP and it was really crazy hearing you describe things like the dot test and dropping things. No one gets it. Thanks for posting this.
Thanks. One thing I didn't discuss in the video was getting the ERG test. Ugh that one was, well...bright to say the least lol. I'm assuming you've gotten that test as well?
Erg, necessary but never again for me!
Good video Thank you x
Impressive how you delivered the info. Thank you!
Thank you. I appreciate that. Glad to hear that the video was informative for you.
This was a really great video! I've been diagnosed with USH2A about 2 years ago and recently figured out which exons I have the mutations on (61&63). My condition is stable and slow moving which is great but its been difficult coming to terms with the diagnosis but I am excited about current studies for USH2A,(although not for my specific exons) I'm hopeful that soon there will be something for me and everyone who is effect by not only USH2A but RP in general!
Hey Juan! Excellent video, you described this so perfectly. I also love the education, great job! Matt
Thanks Matt. I didn’t want to have way too much info to where it feels like too much, but wanted enough information to be there to educate. So I guess I got the approval from a fellow RP buddy lol.
Thanks Matt. I didn’t want to have way too much info to where it feels like too much, but wanted enough information to be there to educate. So I guess I got the approval from a fellow RP buddy lol.
Thanks Matt. I didn’t want to have way too much info to where it feels like too much, but wanted enough information to be there to educate. So I guess I got the approval from a fellow RP buddy lol.
JC5 Productions yeah it was great, I really enjoyed it :-) good work!
Hay good to see your videos still. Thanks for the videos. This is the first time I have heard someone explain what I see aswell with the tunnel vision thing keep it up and thank you
It’s so hard to explain how you see things sometimes isn’t it? For me it’s the peripheral vision. It really feels like an “I can see, but I can’t” situation with my peripheral vision. Glad you could relate.
Very well put and educational. Glad you were able to put your condition out there and your thoughts on it!
Thanks Laura.
Really good video ! I feel U ! I got the same shit since I am 3 years old. Stay strong and enjoy ur life
Thank you, and I’m enjoying things for what I can. Definitely have done a better job in coming to terms with my sight loss compared to several years ago when I was about to start my cane training.
Great video. I really enjoyed zooming in on the graphics.
Haha thank you. I wanted to make the video a little visually interesting for those who have vision or some vision.
Wow. I really loved the production in this video. You're so talented. I learned a lot more about my husband's RP. Thank you. God bless
Thank you so much for the compliment :) I’m glad it was able to shed some light about the condition. While your husband’s RP is going to be slightly or very different from mine, I wanted to try to cover enough of the symptoms so anyone watching can have a general idea. Thanks again.
Hi Juan Alcazar,I love and enjoy watching your video and you talked about you having to,I have been visually impaired with limited vision,I was a white cane with a roller ball came tip.My very low vision loss is from me being born premature 58 years ago.Over many years my very low vision loss has gotten worse,during the late fall in 2022 or 2023 I ended going through cataracts for six months until I had day surgery on my eyes to replace the original lens with new lens that healed up in 8 weeks and on dec.5 2023 I ended up getting rebound cataracts back again and in 3 days I have an appointment with the cataract doctor or surgeon to have my eyes re examined to see if my eyes can be operated on or lasered.
I was 20/400 and now I am 20/200
Thank you for watching, and also glad to hear that your visual acuity increased due to the surgeries. It sounds like it’s been a long journey for you.
Excellent job on explaining RP/Usher's syndrome. I have Usher's and it's great that you posted this. Thank you!
Thank you so much. I was nervous about posting this because I wasn’t sure if I could include everything about RP. Well, that was one of the reasons, but that was a big reason, so I really appreciate what you said. Thank you.
Excellent video and explanation of RP. I also have RP and am going to share your video with friends and family. Thank you!
Hey, thank you for saying that. Hopefully it helps educate a bit about the condition. Glad to hear you’re sharing it.
Was nice chatting with you on blind to billionaire today....your dealing with alot of the same I am....I have x linked RP. I look forward to seeing more of your videos and chatting about our experiences great video
thank you and I apologize for not being very chatty during the livestream yesterday. I was trying to finish this video half the time I was tuning in to Matt’s video stream.
Thank you for this video! My sister has this condition and it helped me to understand her vision better
Hey, thank you so much for watching. I’m glad that it helped you understand the condition better. Vision problems can be difficult for folks like me to explain to others when they’re not going through it, so if the video helped even a little bit then I’m glad to hear that.
Thank you for making this. I was lost in a hospital system for 9 years without being checked. I find it near on impossible, trying to explain RP to my friends and family and have been sending them your video. I watch it so many times too and it really is amazing.
RP, or any eye condition really is hard to explain to others. Even with those simulation glasses, they don’t really fully show the experience. It’s one of those things that someone has to go through themselves. Although I don’t wish vision loss on anyone solely to just experience what we go through, it’s something that can be frustrating for others to understand. Especially when we try to use our remaining vision to see anything and then the whole, “You’re not really blind” remark is made. Sorry,, went on a mini rant. Still though, glad you shared the video and if it at least gives someone an idea of what you’re going through then that’s great.
I have RP too and this is a great video!
Thank you. I know everyone with RP sees a bit differently, but I thought sharing what I see can shed a bit of light for those unfamiliar with it. Or even those who have it like yourself can kind of make a bit of a comparison as well.
Great video man! Thanks for the shout out!!
You’re welcome Sam. I really like that shirt so I had to mention it and give you a shoutout.
Hey Juan, Great video! I don’t think I ever knew that they were called rods and cones because that was their shape. So even I, a person who has had RP almost my entire life, learned something from this video. It’s also really interesting that you also experience those kind of swirling white lights. I used to have that really often as a kid but not so much anymore. But the weird thing is it happened right after watching this video. I don’t think I ever realized that it was a symptom of RP or that someone else experienced the same thing. Also thanks so much for the shout out!
Yeah it was kind of odd that the cells were actually kind of sort of shaped like that. That is bizarre about the swirling lights and how you can see them now. I’m curious if you’re still seeing Them now that it’s been a couple weeks since I posted this video. That’s some next level magician stuff from me I guess lol. Kidding. Also you’re welcome about the shoutout. You have a great channel so it’s always deserving of a shoutout.
Thank you for the description! I know a boy who may have RP, and it helps me get an idea of what he may grow up with. I hope a cure is found for everyone with these conditions.
RP can be a bit difficult to live with at times, and other times it won’t seem too bad. Although the more one has vision at first, the more jarring the changes can be for the individual.
My brother and I have the ame condition. It's always crazy to hear others describe their experience with it. Thanks for sharing!
That has to be interesting in having a brother with the same condition because for me it’s hard to describe to my brothers and family about it, so at the very least you have someone who can relate to how you see things.
Great video Sir!!! My mother also has RP and now she’s turned completely blind!! I know it’s saddening when you have seen the most beautiful days of your life but slowly and gradually life takes it away. Still, you are doing so well! Hats off to you!! I pray almost everyday for its cure but I don’t know if it will ever come. Also, if my mother has it do you think I am gonna have it too ??
Thank you, and I’m hoping your mother has been able to adapt as best as she can with her sight loss. Has she been completely blind for a short or long time? It’s difficult to say if someone else in the family will have it too. It’s better to talk to an eye specialist about that since I really have no simple answer for that.
I'm ready for the treatment and also for the clinical trials
Listing to your telling of your RP journey was like listening to someone telling my own story. My symptoms are pretty much identical to yours. I found myself nodding along as you were talking. I also have snow vision and have recently been diagnosed with macular degeneration (not age related, that's different) in my left eye. I have no usable vision in my right eye. My peripheral vision is the same as yours and it was good to hear you talk about that because I didn't have tunnel vision but that's all you hear about when people refer to low peripheral vision. I was treated for inflammation for years until they did a gene test. You're right about having to constantly adjust to further loss of vision. However, I can still see the faces of my loved ones and I'm so grateful for that. I now have monthly injections in my eyes and hopefully they will preserve the central vision in my left eye. Thank you for your videos, they help me to realise I'm not alone in this. Xx
Thank you for saying what you said. I’m glad that the video made a connection with you. RP can definitely be something difficult with the constant adjustments. I wish you the best of luck with the injections, but I think I am too chicken to get something like that done myself. So more power to you.
Sounds exactly what my husband is going threw right now thank you for this video so I can better understand what he is going threw
Thank you for that. I’m glad that the video has helped out a bit in better understanding the condition. Sometimes it can be difficult for us to explain what we’re going through just because someone with good vision might have difficulty visualizing exactly what we’re seeing.
Subscribed ❤️
Thanks for subscribing. The video output is a little slow for me at the moment, but I’m hoping to pick things up in the near future.
Great video. I was diagnosed last year (and now know I have two variations in my USH2A gene). It’s quite late onset, so they hope my progression will be slow, and mild. But who knows? Right now nightblindness and photophobia are my biggest challenges - gotta find a middle ground! The not knowing what will happen next is hard, but I’m glad to have found lots of UA-camrs I can relate to and learn from. :-)
That's the tough part. Not knowing what will happen next. Here's hoping your progression is slow. I agree with you also that I'm glad to have found so many people online that are going through their own vision loss journey. It doesn't feel like something we're going through alone.
@@JuanAlcazar so its genetical hereditary, and its accompained by vitiligo on the skin and other stuff.?
@@Mane_ea yes, genetic way but not vitligo n other stuff every time.mostly only gets RP
You have just described exactly my story with RP. I completely understand you. I am sure, science will find a cure in the next years. Keep strong
I’m glad that you were able to relate to this. Sometimes I wonder how many other people with RP have similar symptoms as myself. Those floating white blobs still get me sometimes at how awkward they are haha.
Thank you sir
I have RP as well and you did a wonderful job explaining what is experienced with it. Wish you all the best keep up the great videos my friend!
Thanks for that. It was a tough video to make because I didn’t know exactly how to present it. I wanted to do a more narrative and movie like video, but then I wouldn’t be able to tell as much as I did in the video. Still though, I’m glad of the feedback that it’s gotten so far.
You rule man! Thank you so much for sharing your experience and references! i as diagnosed with rp back in 2009. I am 35 y/o now and try to live a normal life as much as possible with my remaining 10 degrees of central vision.
I will be checking out the other channels you mentioned.
Wish you the best, and thanks again!
Thank you for the compliment. Something that’s fascinated me a bit is that some folks who have an RP diagnosis is that for some, the central vision goes first. I kept thinking that it was the peripheral that went first for everybody who has RP.
@@JuanAlcazar
I was surprised to learn that as well.
BTW, I am now trying these glasses: retiplus.com/?lang=en, which seem to be an amazing aid for people suffering from rp. Though expensive, this device allows you to make the most of your remaining central vision, using augmented reality to project the entire environment in front of you onto your central vision field. It brings you to tears to be able to see entire rooms and people's complete bodies again.
Last but not least important, these glasses allow you recover night vision, which is no doubt an outstanding feature.
The downside to Reti plus is that it requires training to be properly used, and it can be confusing to see objects at a distorted distance (as it happens when looking into a rearview mirror)
I will start my training sessions to use these glasses next Wednesday.
Best of luck with those and hopefully you get the results that you’re hoping for.
i just wanna shout out my friend squisy who also has RP who plays with me the video game called sea of thieves, this guy is a an absolute beast and plays insanely well, even better than MOST players in the game, i feel bad for him, but he genuinely makes me forget he has it and is just so happy all the time , i have immense respect towards him and wanted to share the experience of this absolute legend here
@@xyz-qn9eb
There’s a few blind gamers out there, so glad to hear of another gamer who’s blind.
I was told that I had OP at the age of eight start losing my vision in my 20s and 34 years old now a Canadian and yeah I have days where my vision flickers between light shadow and darkness but learning about your guises version of RP is really helped me I actually am not afraid to go blind because I find her is more numbers of friends with it then being on your own
It can be scary at first, or even at times, but when you do find that community of others who also have similar or the same condition it really helps a lot. The last thing we want to think of is that we’re alone in going through this journey.
Hi Juan, So yeah, wow, you described the current state of my RP progression with what you’re experiencing now. Although night blindness has been an issue for me since I was in my mid twenties, I am now having far more issues with bright light and my ability to see text in books, or to read a tape measure, reading glasses don’t seem to help either.but, as you stated, I’m thankful for the vision I do have!
I’m almost 65, been a red tip cane user for years now, and as you also mentioned, my type of RP is Ushers Syndrome, so, yep, sporting a pair of hearing aids as well.
Thanks for the crescent moon images, been trying to explain that occurrence to my wife for years!
Keep the faith young man, everything on this earth is temporal, we’ll be fully restored in the next realm for eternity.
Thank you for the comment, and it sounds like you’ve done your best to live with your condition. I’m curious about your Ushers Syndrome. Did you happen to have any hearing problems before you had problems with the RP? I’ve just read that most of the time it’s the hearing that is affected before the vision is.
❤ your video
thank you for describing our P and I like your channel I know about our P since the age of eight to the age of 34 guys give me hope thank you
Thank you. I’m glad the video could help out a little bit. I know my experience isn’t going to be the same for nearly everyone else who has RP, but I thought that maybe a few of the things I included would be relatable in some form or another.
covered all the points...great..i have also RP with AMD....everything seems like yours..btw, second sight medical group developed a new device for total blind person to get some light...its aapoved by FDA last this month probably. Thanks.
I’m 53 and also have RP like yourself I have one ok eye, my right eye is also along for the ride. In South Africa I’m still allowed to drive for now. Thanks
We study newt retinal regeneration, they are the only animals that can fully regenerate the neural retina. Newt retinas have similar anatomy to humans. However, funding and awareness to newt regeneration is lacking.
Thanks for sharing. I was diagnosed with RP 11 years ago (Im 40) but the symptoms started in my teens. Its hard and frustrating to explain to family and friends. This helps!
Thank you for saying that the video helped in explaining things. It’s true though that a lot of times it’s difficult to put things into words. I know there’s simulation glasses and all, but they don’t really capture everything with how things are like.
Something i can relate to
My brother has the same Eye condition. It is so heartbreaking living with someone with this condition. In memory of my brother, I am doing a project about this disease for my Pathophysiology class. Thank you for educating me about this condition! you're so sweet.
Thank you so much and best of luck with your project. It can be a difficult condition to describe, especially if you’re not the one going through it, but I’m glad that the video did shed some light into the condition. Although someone else with RP will have a slightly or very different experience from what I described. Did your brother have RP all of his life, or did he experience the symptoms later in life?
@@JuanAlcazar he started having vision problems when he was 8-9. For years the doctors misdiagnosed him, no glasses would help his vision. The doctor then taught he was lying, years later He was diagnosed 3 years ago. He is going to be 21 next month.
Its frustrating when a doctor thinks that someone is lying about their vision. I’m sorry to hear that he ended up going through that experience.
Thank you for this… very well explained!! I have RP… I still drive.. I’m fighting this tooth and nail!!
No one understands why I trip over things or how I don’t see them or what they’re handing me…. So hard to explain to them.
It's such a tough thing to explain to people. It's definitely one of those things that unless someone is looking through your eyes that they won't know exactly how you see the world.
I am rp patient.. I had treatment in ayurveda 5 yrs ago.. But now im not using any medicine. Bcz.. I was unaware of its seriousness.. Bcz its the starting stage.. But after seeing your video. Iam aware of it.. I suffer the same difficulties.
Are you currently experiencing some of the symptoms? I’ve heard that sometimes the night blindness is an early symptom or RP. Not sure which type of RP you have since some symptoms come earlier than others for different people. Do you happen to have any light sensitivity or loss in peripheral vision?
Thank you for making this video, trying to put into words what having RP is like is extremely difficult. I was diagnosed last year, but I’ve been experiencing vision loss for about five years. I have two brothers who also have the disorder, and strangely enough, the symptoms are manifesting differently between us. My older brother has central vision loss, my younger brother has lost almost all of his peripheral vision, and I have vision loss in somewhat of a donut shape around my central vision. I definitely struggle with low light vision and differentiating dark colors, but what’s been particularly frustrating for me is reading. Looking at a word, half of the information is just missing, at least that’s the best way I can describe it.
Everything you said about the grieving process definitely hits home. I think it’s particularly hard for those of us with slow vision loss because most people look at vision in a very black and white sort of way, assuming that if you’re not completely blind, you can just go to the eye doctor and get glasses or corrective eye surgery. It’s definitely complicated.
It can be frustrating a lot of times because even with someone going through the same eye condition the progress can be different and the amount that one can see will likely be different from the next person who has the same condition. I totally agree about the slow vision loss. It can get frustrating at times because when you notice that you can’t see or read something it kind of hits you and then you realize that you can’t get that small amount of vision back. Hang in there as best you can. The good news is that there are many support groups both in person and social media. If you haven’t had the chance to investigate further I encourage it since it very much helps hearing from others going through a similar problem.
Hi, my best friend, and five of her siblings have RP. I remember helping her reading and writing when we were at school. She developed a great memory and her other senses are sharp. It has been hard for her because her favorite thing to do was to read. Now, she gets knowledge from UA-cam and documentaries. I hope that soon they find a cure to this condition.
Same here thanks for the vid u described exactly what I'm going through
Thanks for the feedback. RP is one of those kind of difficult to explain conditions. Then again, a lot of eye conditions are difficult to explain since others can’t really see it exactly. Although I’m glad to hear that I’ve been able to describe RP pretty decently in the video.
This is so relatable. I'm 31 and was diagnosed with retinitis pigmentosa 4 years ago. My life is fine and it doesn't bother me usually but when I listen to this video it brings tears to my eyes
Thank you for the feedback. Has your vision changed drastically since you were diagnosed?
@@JuanAlcazar yes somewhat drastically. When I was diagnosed I was still driving. Felt like I had to quit that after a year. Send a couple years later at this point it's almost impossible to read text
Try TURMERIC + BLACK PEPPER + GINGER it helps
Same happend with me. Since 2000 AD
Thanks for explaining this. How you described your vision is very similar to mine but due to a different retinal disease. My boyfriend has RP, and it’s a more rare form of it. I think since the nearly 6 years we’ve been together, he’s lost more of his vision.
Has his vision loss slowed down during that time or has it remained relatively the same?
JC5 Productions From looking at how he does things, I think he’s lost more than he realizes. I asked him a few times, but he said he doesn’t pay attention to his decline. His vision isn’t very usable to him anymore. He was diagnosed when he was 8, and he’s 40 now.
Oh ok. Sounds like he’s very much adapted to life with his current vision. Still doing my best to do things less with my eyes so as to avoid any migraines.
Hey I'm 23 years old, although I have RP and suffer because of it, I'm a student of Optometry.
I know that I was wrong when I chose this department to study, because a day is gonna come when my eyes won't be able to percept light.
Actually, you might be able to give others in the Optometry field a more unique and personal perspective about RP. It might be an advantage of sorts, but I know what you mean when you say that it might have been not a good choice to study it. Then again, I went to film school and now with my vision a lot worse than when I went, I’ve done what I can to make it work for me. Yes, this is comparing apples and oranges, but I’m just trying to say that you might still be able to find a path down the road you’re currently traveling through.
I can relate to the meteor shower. Same experience that made it really real. Thank you so much for sharing this! I was diagnosed in 2019. It's rough
Thanks for sharing. It can be tough when you experience those moments. Hang in there as best you can, and if you haven’t already, I’d recommend learning or getting traning on using any accessibility features in case you need to use them in the future on your phone or computer.
I know I'm not the only one tired of hearing people telling them to get lasik eye surgery! I'm experiencing the same exact thing I pray to God for help!
I think the laser eye treatment recommendation comes mostly from not knowing fully about the condition. For some people with minor eye problems something like laser treatment could work, but it definitely is not a one size fits all kind of thing.
My son was diagnosed through genetic screening with RP but had never failed a vision test. He’s severely disabled so can’t tell us anything. He failed in two areas at his most recent screening a few days ago. He developed astigmatism and and strabismus. Has anyone else had this experience? He’s 10.
My Mom has RP, she is 63, has Diabetes and can still see but has great problems with night blindness
Night blindness is one of the early symptoms. Well, an early symptom for some people. Has she had RP for a while, or is it recent?
My two brothers and I have rp. I can relate to everything your going thru. Even the cataracts
I think it’s great when you run into others with the same condition. Sure it might not be exactly the same, but still. Knowing that someone else is seeing the worlds lot like you do doesn’t make it feel like it’s only you. How long have you had your RP?
I hope technology will advance to the point of curing RP totally and I hope youll experience full visual field.
While there’s a lot of research being done for looking for treatments and cures I also think that just as much money should be put into making things accessible for those of us who have RP so we can live our lives and do our everyday things in the world.
i have it i am 74 its been tough making it .i am off the chart
Have you had a chance to investigate any local support groups in your area? Just tossing that out there since that’s something that really helped me out.
My mom was diagnosed 6 years ago and her vision has deteriorated significantly in the last 3 years. She takes these Vitamins oxidant, but that's about it, there is no way of slowing it down. Pretty crazy to hear what people have to go through. Thanks for putting this together to help everyone understand! God Bless!
Thank you, and it’s definitely not an easy condition to go through at times. Especially when one starts to notice that there has been a degree of vision loss over time. Best of luck to your mom, and I hope that she is able to get the training and help in order to make that transition as smooth as possible for her.
Hi john, im 42 from Aus, l have it and l carnt weld anymore, all the same, never seen many stars, it sux .... l wish there was a cure.... fingers crossed
Great video - my mum, brother and I have RP, mum now has a guide dog. So we have known about it for a while in watching mum go through it all before. I am 36 now and have only started getting the flashes 10 months ago (photopsias/phosphenes) - they cascade down in semicircle shapes from both corners of my eyes, are also slow moving vertical lines at times and also big circles that pulsate out, some brought on by lighting changes, other times postural changes (sitting to standing) and other times mechanical such as a sneeze and cough - do others get the ‘flashes’ from RP in this way too?
Just wondering if it was a bit simpler to adjust to the RP since you mentioned that other family already had it? Also, for me the lights in my field of vision sometimes appear in instances like the ones you mentioned. Although they don’t necessarily change shapes and remain mainly in that half moon shape blob.
Sorry for the delay - yes it was better having mum go through it first as I learnt what she needed to get checked when and terms of things and also the world of guide dogs, white canes and care support etc, I’m not at the stage yet but good to know. The area for me that is most disturbing is the light show which started suddenly in Jan 2022 and happens every day since. Are your flashes daily? And every hour? There is not much on the net about people with RP and the flashes /light show.
Nice
Thank you.
Hi i am from nepal and 46, i am suffering with same issue😭
Bro I too a RP patient
I think I am following your symptoms
I have same symptoms you have
except huge night Vision lose
I can better to see night than daylight
Bro how to avoid Cataract for us?
how to treat it?
what is your current status?
I have that shirt and I so understand
It's such a great shirt. It explains everything in only 6 words.
The crescent moons for me are more like waves for me but still moon shape. It's hard to explain.
I have a feeling I know what you’re talking about because my crescent moons aren’t always moon shaped. They can be a bit wavy and also appear as crescent moons spinning in opposite directions only to meet up and join in the middle of my visual field.
I'm going through a hard time right now with my RP got the testing done they said I have to do it again didn't work but what is going on in the world right now I can't right now
I know , things are tough right now and I can imagine how tough things have to feel for you right now. I’m sorry to hear.
There is an expert eye doctor Dr. Anupama J Dilip ( BAMS, MS) at District government Ayurveda hospital at Asraamam, Kollam ( district), Kerala ( state) , INDIA who treats RP and other complicated beye diseases very effectively. As it is run by government some medicines we will get free and others we have to buy. The doctor is available on her OP timeings 9 a. m to 2 p. m. The hospital is 2 k. m away from kollam railway station.
I've got RP and congenital nystagmus. Someone just told me taking a certain eye drop (Dorzolomide HCI) will stop the progression. Anyone heard of this?
Abcs4 medicin ,where kan find? Please help me
Where kan find for abcs4 distrofi rp, medicin??
I have RP. and sadly stopped driving 5 years ago. My central distance is 20/100 and my peripherals is 15°. If I wear glasses to help my distance vision to be 20/80, can I still drive? Or should I never have driven?
That is something that should be discussed with your doctor to be honest. Legal blindness is determined if either your acuity is less than 20/200 or if your field of vision is low. Like I mentioned, it’s definitely something to discuss with your optometrist or ophthalmologist.
I have RP and everything you said i have lol.. I get those crescent moons too..I told that to the last eye dr and he told me it was in my head ..never went back to that dude lol
Reading what you posted is reminding me of those occasions where I wish I can do some sort of telepathic link or something just so a person can see exactly what I see through my eyes. No simulation or nothing. Just the actual way I see. It can be frustrating at times. Especially when it’s difficult for someone to fully understand what you can and can’t see.
I am an RP person. I am 51 years old. I am from Laos. I have also cataract in both eyes. I have problem seeing in the day time because of too bright for me and difficult seeing at night time. Please advise if any way to improve my eye side from this condition
I would go to a retina specialist or any specialist that focuses on your condition to get a better idea on what can work best for you. Your way of seeing is going to be a bit different from mine, so it’s unique for everyone. I would get your your vision checked first and then proceed with anything further.
Bro we are in the same boat because I'm also suffering from retintitis pigmentosa
How’s your vision currently? Do you have any additional or less symptoms than the ones I mentioned? Just asking out of curiosity since it’s always interesting knowing that even the same condition can have different visual results.
Should I let them experiment on me?
Im going through this now
Is your diagnosis recent or have you had RP for a bit of time now? Hoping you’re finding the support you need to help you out in your sight loss journey.
Dear brother am also affected in this complaint.i affected from 2005 to till now.my vision day by day reducing.am in India tamilnadu any treatment for this disease please update me bro am 30 years old.pls share me if any treatment for this disease.
I don't think there's any cure or treatment at this moment. Clinical trials, yes, but I think for those who have RP it would be good to know those blindness skills while one still has remaining vision. I can still see some but I'm learning Braille. I already use a cane to get around and I'm using screen readers a lot of the time.
I'm trying to understand. I know that tunnel vision means loss of peripheral vision so you don't see things in your periphery, but what does someone with tunnel vision see when they keep their head straight and turn their eyes to the left or right? Does the tunnel still stay in the center, or does it mean that when you turn your eyes you turn into darkness? I guess I'm trying to understand the term central vision. Can you help me understand? I know someone who has a relative with tunnel vision, but I don't want to make them feel uncomfortable by my question- I'm sure she gets enough questions already.
I am basing this on my own vision, but when I look around, my central vision follows my pupils. So I can be looking anywhere with my eyes, and the central vision will remain wherever my eyes look. While it’s called tunnel vision, it isn’t really much like looking through a dark tunnel. It’s more like having a narrow area of visual focus surrounded by many blind spots, or a very large Blindspot surrounding it. Hope this helped a little bit. Thank you for the question too.
I see this is about 2 years old. Has your vision changed significantly in the last 2 years?
I’ve noticed a bit of a decrease in my vision since posting that video. Nothing too significant, but I’ve noticed a few small details have become a bit more difficult to see.
Hi sir my name is avanthi 17 years my problem night blandneess plazz help me sir iam in india
Severe glaucoma butt from watching some of the videos about RP I have lived through every symptom and still is living through the symptoms of it should I get a second opinion because in my heart I don't I believe it's RP
And I also apologize if my comment may not appear clearly because I can't type cuz it's hard to see the typewriter so I'm speaking through the mic 9:20 😅
I say get a second opinion. Sometimes different eye conditions might have similar symptoms, and since there’s so many variations of just one condition alone, it wouldn’t hurt getting a more clear idea from the opinion of a second doctor.
Hi also if theres any rp people from Victoria australia, please touch base....mick
Hey my mother has Rp i know there isn't any cure but can we replace the eye with doner eye . Will it help i am too afraid of asking this question with anyone.
I’m not sure if it’s a possibility to recover any vision doing that. The retina is a very complex part of the eye. I would say that the answer is no.
@@JuanAlcazar there's a homoeopathic doctor and also and ayurvedic hospital that claims that they cannot treat this disease but can stop the rest of the process can you tell if it's true or not or are they just trying to take money by doing such things.
I don’t think I can fully answer that question since RP can slow down or increase on its own. While there are things one can do to help in slowing things down if it’s possible like wearing sunglasses when stepping out in the daylight, I don’t know if things can be slowed down medically. If there isn’t a large number of eye doctors saying that RP symptoms can be slowed down, and only a small number saying that they’ve found some sort of secret way of doing so then I’d be skeptical about it.
yep, accept and adjust. i have panuveitis and my right had completely lost its vision while my left can only see a little dim light over the years. tbh i really miss having sight. i miss digital drawing, working as a graphics designer, seeing my family's faces and of course,watching anime hihi *sigh* c'est la vie .
Sounds like you must’ve had a difficult time adjusting since you did so many visual things. Was it tough to make that adjustment?
@@JuanAlcazar oh yeah definitely. in fac i put a date on my last drawing which i don't normally do. . it's scary that it looks like the curtains have been drawn and the show's over. we'll just have to move on and go to another show which gives us a whole new experience. i hope you get what i mean. haha! anyway, i always distract myself with audiobooks. i let my imagination run wild. it'slike your watching a movie especially when the plot is so good. 😁 if you'd like to check out my old artworks, my IG is artyshtic 😄
@@JuanAlcazar oh sorry there isn't any image description on my posts. 😳
Hi dear friend. I have rp live in TX. It is hard but we got move on. I would like to chat with you. Thanks.
Sorry for the late reply. I can be contacted on my social media accounts which I've linked on my video descriptions.
Jesus will heal you have faith
Amen
I have rp usher syndrome and i diagnosed 4 years ago
I have cataract on my right eye i can't see nothing
Am in absolute Terror going to not able to see am 23 girl and i can't do nothing about it on top of that i can't find a life partner who understand the condition i decided not to have kids even though i love kids i can't stand the idea of transmitting the genetic deformation to my kids am really depressed right now
Hoping your situation improves. Have you noticed if there’s any centers for the blind locally in your area? Perhaps they can be of some help. I got a lot of my training and support from my local organization. I think reaching out to see what could be in your area could get you started in the right direction.
I have exactly same problem
White background is the problem to me
It can be difficult to go outside without sunglasses and even read books. Everything on my computer is either dark or inverted colors.
I have it. Always wore HEAVY script since the age of 4. Am 27 now and cannot legally drive. Have tunnel vision and complete loss of sight in low light levels. I fucking hate it
Do you also happen to have light sensitivity? If so that’s where things get tricky and kind of annoying because if you have a computer you need to put it to dark mode so it doesn’t hurt your eyes, but then any white text in dark mode starts becoming super bright and all of a sudden it’s too bright again. Yeah, at least for me it’s annoying, so I use a screenreader most of the time instead.
Please help me I'm so scared I'm in need of an emergency treatment my field is decreasing day to day
Hi Hameed. Thanks for contacting me about your vision loss. I’m sorry to hear that you’re going through a tough time with it. I’ll see if I can contact you via email, but I will advise to not post your phone number in a UA-cam comment. You never know if anyone will see it and call out of nowhere, so just take precaution next time.
I will also say that it will be helpful if you contact any local organizations for the blind or any eye specialist in your area to make sure you can get help nearby. I would also try to find any friends or family who you can confide in and talk to about this since emotional support can help so much too.
@@JuanAlcazar sry sir but the thing I want is the address of the hospital where the treatment for rp is going on
@@JuanAlcazar also I do not share my phone number hereafter
I have the same problem,cure please,iam just loosing it
How long have you had the condition for?
Its genetic,i started using glasses from 10,then at 15 night blhndness got worse ,at 20 i stoped driving in the daytime,21 came and it got awefull,nw am 27,iwonly use smartphone,cant go to ciniemas,cant go alone at night,cant use PC OR LAPTOP,can watch tv kinda,no colours,like u said on the video every dark coluor is black,and doc says its Retinitis Mccnsalsa? I dnt man,iam from india by the way.
Any gadgets or magnifying sunglasses you use? Suggest me if you use any
I mainly use my iPhone for magnification. I don’t really use any other magnification like glasses, etc. Although I would try to look into the handheld magnifiers like the Ruby or other magnifiers from HumanWare too since they’re pretty portable and could be used in a pinch.
Whatsapp no?
I've been diagnosed with severe😅😅
Hi I'm Maminata Dembele I'm leaving on United Kingdom, I really need your help, I have the same problem, please need help thanks
Hi, thanks for reaching out through the comments. Have you looked into contacting the RNIB (Royal National Institute of Blind People)? They’re a charity in the UK that handles services and support for the blind and low vision community.