Early Signs and Symptoms of Retinitis Pigmentosa

[@BlindtoBillionaire]

Thank you for watching this video and supporting my channel. It means a lot to me that I can help others and offer support during the difficult times of vision loss. I sincerely appreciate you taking the time to watch this video and all the other videos on this channel. Always feel free to leave me comments and ask any questions that you may have.If you're someone with RP, what are a couple of the earliest symptoms you experienced?Thank you again, I look forward to hearing from you!Matt

[@amandasarrio2918]

I was diagnosed at 14, EVERYTHING you are saying is what I experience in my everyday life, I am 32, they say I may have the slowest progressing RP they have ever seen, my symptoms at 32 are what they would normally be at 20-25. They want me to participate in studies to help others with this disease. Thank you for your story.

[@BlindtoBillionaire]

Hi! It’s so great to meet you, thank you so much for watching this video and for the comment. It is so interesting how both of us were diagnosed at such a young age and now we are very close to the same age now. I’m glad this video was helpful to you and that you were able to resonate. Of course, I never want anyone to suffer from vision loss like me, but this also nice to meet somebody else who has experience something very similar. I’m always here for you if you ever need to reach out, that is why I have this community. Never hesitate to reach out to me if you ever need to talk about anything or if you just want someone to connect with who understands, I am here for you! Thanks again for your support on this channel, it means a lot :-) MATT

[@Dlw031510]

Gosh, this video is almost exactly in point with what I went through when I was younger. I didn’t get diagnosed with RP until I was 27 though. Great video and extremely relatable.

[@BlindtoBillionaire]

Hi David! Thank you so much for watching this video and for reaching out. It is nice that this video was helpful and offered some relatability, however, I never wish for anybody to be diagnosed with retinitis pigmentosa. It is nice to hear that our lives and situations were similar in some aspects. Thanks again David, I sincerely appreciate your continued support on this channel and for subscribing. I look forward to talking and connecting with you again sometime soon. Matt

[@mhf01147]

Just came across with your channel, Thanks for sharing your journey. I am also with RP but didn't know it until my mid 30's and although it was very hard to accept the news, like you said it totally made sense why I was never good at playing sports and didn't do well reading and writing. Please keep up with your videos. I enjoyed your travel logs cews too.

[@BlindtoBillionaire]

Hi! Thank you for the comment and for watching my video. It is nice to hear from you! I also appreciate hearing your story. What were some of your early symptoms you experienced prior to the diagnosis?I hope my other videos and future videos also provide value for you. Thank you again, I look forward to hearing from you!Matt

[@suryasarkar87]

What is your early symptoms yuki? And how many years it takes to diagnosis that you have RP ?

[@ryanburch9195]

Hello Matt! Good to see you! I have a friend who also is suffering from retinitis pigmentosa, so getting to hear you talk about it is very informative for me, so I can get a sense to the changes that my friend is going through with her vision.

[@BlindtoBillionaire]

Hi Ryan, thank you for the comment, it is great to hear from you! I am glad this video was helpful and gave you some insight into what your friend is possibly going through. May I ask the extent of her vision loss?I hope my channel and videos can continue to be helpful for you, but also helpful and supportive for her. I hope she is also able to find value in the content I deliver through video. If you or her ever want to connect over the phone, I am open to that too. I want to be as supportive and helpful as I can. Again, thank you so much for watching and commenting, it is great to meet you, Ryan! I look forward to hearing from you again soon!Thanks again!Matt

[@elizabethtufts3535]

Thoroughly enjoyed hearing your experience with RP only because I feel you understand us who are also living with this same eye condition. I was diagnosed with RP in my 30s. My Dad's vision was passed on to me and l have a daughter with RP Keep your encouraging words coming. I appreciate it Liz from NS CAN

[@JuanAlcazar]

The night blindness and disappearing objects is an all too real thing for me. Wouldn’t that be the same thing as the disappearing objects though? The visual field test is so awkward for me. I’m trying to click on the button when I see the flashing dots but I can’t see anything and it feels a little embarrassing lol.

[@BlindtoBillionaire]

Hey Juan, thank you for the comment! The interesting thing about RP is that everyone has a different rate of progression, but at the same time, it seems that everyone experiences night blindness at a similar degree. Yes, night blindness and disappearing objects are similar.. I guess if the object is in the dark, it will always be disappearing. :0 lollol, the visual field test can be embarrassing, but it is also nice to see how much peripheral vision we have remaining. The last time I did the test, the lady came over after a couple minutes to make sure it was working because I wasn't clicking. lolThank you again for the comment, I always appreciate hearing from you, Juan :)Talk to you again soon!Matt

[@BlindtoBillionaire]

Hi Juan! Check out my last video! I featured you! :)

[@jessacasiano3837]

Thank you Sir for educating lot's of people about our condition! Through this many people would understand people like us who have RP! God bless to us.

[@gillart99]

Thanks! I’m newly diagnosed and feel lucky bc I’m in my 40s. Cool video!

[@BlindtoBillionaire]

Hi, thank you so much for watching this video and for reaching out to me. A new diagnosis can be tough but I love your attitude. It is so nice to hear from you and know that you are reaching out to others during this time. Please feel free to always use us and this channel as a resource. Feel free to reach out anytime if you need support in anyway, if you want a friend to talk to you, or you just want to talk for any reason. That is the reason that this channel exists. But like I said, I love your attitude about this whole thing. A new diagnosis for many people can be devastating and very tough. But it seems like you are doing the necessary research and working through this. Thanks again for reaching out to me and for watching this video, I am so happy to hear from you! Talk to you again soon, Matt

[@mistyknights8624]

Also color blindness is part of rp and some people get r p they also have usher syndrome

[@audreytempleton4415]

Thank you for telling your story.my grandmother had r.p.i always knew her as b!ind because I grew up around her and it was normal.she played pianno.. crocheted doilies with that thin string .wrote songs. Cooked ..washed c!other on a wringer washer ..raised seven children alone ..her husband died within weeks of their twin boys birth.she took braille classes in her sixties..could type letters before the braille..I never knew anyone else who had r.p.other then her but she encouraged so many others when they got news of their own impending blindness.matt because of her ..I realize the true strength of the human spirit in adversity.and the perfect nature of God in it.that is something most won't understand my saying but I know my Granny could see from a depth that sighted folks don't.or can't .she cared deeply and never used her blindness for anything except a tool to help others.you remind me of her because of your caring heart.and get this matt !alot of people who knew her..did not know she was b!ind !it's true ! Thank you for letting me ramble on about my granny ..and thank you for letting others know about this condition.many peop!e have no knowledge of it andthank you for your kind heart and helping all of us the way you do

[@Igbostudy]

Keep crushing Matt. 👍

[@BlindtoBillionaire]

Hi Igbostudy! Thank you so much for watching and commenting! Also, thank you for the cool and encouraging words! I really appreciate it!! May I ask if you or someone you know has RP? Thank you again. I look forward to hearing from you, Matt

[@Igbostudy]

no , I am inspired by your goal

[@BlindtoBillionaire]

Hi Igbostudy! Thank you! That is so cool that you follow this channel because you are inspired by my goal! That means a lot to me!! May I ask what your goals or aspirations are in life? Thank you again for the support! Matt

[@marjoriepeterkin1280]

Thanks Matt you have confirmed my suspicion that I have retinitis pigmentosa. Will tell my story when I have time. Marjorie

[@waqqasabdul5094]

Thank you so much for this video. I got two questions for you. - When your doctor noticed that there was something wrong in the back of your eye. Was it the first time your eye got diluted? My yearly eye test includes dilution my eye but I’m always told nothing found although I suspect early PR (night blindness, shaky peripheral vision) - Also was your peripheral vision unsteady or wobbly before you lost?

[@perryboy16]

Thanks a lot for posting this. My wife has RP so this helps explain a lot

[@BlindtoBillionaire]

Hi! You are very welcome! I’m glad you found this video to be helpful and that you reached out to me. Hopefully you find some of my other videos to be helpful as well as I hope your wife is able to watch some of them and reach out to me if she ever needs support in anyway. I recognize that you were there for her as well, but it is always nice to connect with someone who understands the same situation. I have this community has a place for all of us to come and share our experiences and discuss our tough times if we are ever having them. Just recognize I’m here for you and your wife anytime you need me or if you have any questions, never hesitate to reach out. Thanks again for being here, I appreciate your support

[@TheAwkwardSacOfDucks]

I always called the "disappearing things" thing selective blindness, because if um actively looking for something I can't see it. The most obvious example I recall was this big (like a foot diameter) salad bowl that I "lost" I got like weirdly frantic about it and it turned out it was literally in front of me.

[@BlindtoBillionaire]

Hi! Thank you so much for watching this video and for the comment. I agree, all of the disappearing objects that end up being right in front of our face. LOL. Those are situations we just need to laugh about. Although it does get somewhat frustrating when items actually do it disappear and they are put in a different spot. Thanks so much for watching this video and for your support on this channel, I sincerely appreciate it! Talk to you again soon. Matt

[@TheAwkwardSacOfDucks]

@@BlindtoBillionaire I appreciate your videos! I have been having vision problems myself and the stereotypical visual representations never match what I'm experiencing. And the way you explained how tunnel vision works and the splotches of nothingness is exactly what I've got going on, though I only just recently noticed the blank spots. I am going to a doctor when I get back home.

[@BlindtoBillionaire]

TheSiblings hi, you’re very welcome, and thank you very much for watching the video as well as for reaching out to me. I’m glad that you find my videos to be helpful. I agree with you, the stereotypes of blind or visually impaired people are not really represented very well or accurate. I’m glad you will be seeing your doctor when you’re back home. Thanks so much for being here, it truly means so much to me. Matt

[@mrsteresa1999]

You are so good at describing things.

[@BlindtoBillionaire]

Hi, thank you :-) glad you enjoyed the video! LOL, I appreciate that :-) have a great night see you soon

[@davin8244]

thanks for the video about your life it is interesting about blind people

[@fabiolasingh9262]

I have RP I can recall same of same problems I thought that was normal when I was 28 one my arteries erupted any of doctor did not know what I have when I was 52 I had very difficult driving at night my doctor suggested to eye clinc6 in Reno dr finally he said what I have I'm still working I stop driving 3 year ago I only have same vision in my left eye I use a cane I have been garden every summer for last 3 years I stared doing my own nails every week with help lam and magnified legged sorry my spending is very bad I'm from Guatemala my cell do not get same times great video 😎😎😁😁

[@akmal_rafye]

Hey, I just came across your channel. It was amazing listening to you talking about your journey and I have more or less the same journey as you. I've got RP too. I have some questions for you as well.

[@richkirmss6940]

I was diagnosed with RP about 10 yrs ago. Had to quite soccer and other sports I loved playing. I guess the only thing Im not clear on is, does RP always lead to complete blindness? Or can it just stop progressing?

[@anandnadar8839]

Did you have any symptoms of rp at the age of 5? Like difficulty in recognising colours?

[@anandnadar8839]

Please reply?

[@BlindtoBillionaire]

Hi, thanks so much for watching this video. Good question, no at that age I did not have any symptoms of any kind. However now that I think of it, there were certain things that I didn’t see you like if I was playing catch with someone I wouldn’t see the ball every time, or if I looked up into the sky to see a bird or something flying, I may not see it right away. So I guess I had some symptoms but we didn’t recognize them at the time. I hope that answers your question, thanks so much for watching out for your support, I hope that helps :-) Matt

[@anandnadar8839]

@@BlindtoBillionaire did you ever wear spectacles at any younger age? And if yes at what age did you first wear it?

[@BlindtoBillionaire]

Good morning, that’s a great question. However, no, I have never worn spectacles. I did try them for a short time when I was younger because we did not know what the problem was with my vision, but we found very quickly that they did not offer any assistance to help me see you. I hope that answers your question :-) thanks so much for watching as always! Matt

[@anandnadar8839]

@@BlindtoBillionaire thanx

[@Jailingfhdhd]

Hey Matt! Thank you for posting this! I know this is an older video on your channel but I just watched it now. This is extremely interesting and informative! I’m glad you made this video. I’m sure it’s very helpful for most of your subscribers which are visually impaired or blind, even those who aren’t blind like myself can definitely benefit from this channel and learn about RP. I appreciate you making this video! Also, I’m sorry to hear that you lost friends. That’s sad but then again maybe not because they weren’t true friends anyway! Was there any point of time in your life after being diagnosed with RP, where you felt depressed about it or did you accept it pretty quickly and just adapt to it? I’m browsing through your channel now and binge watching your videos lol Take care!

[@BlindtoBillionaire]

Hey Tori! Wow, that is so cool that you’re scrolling through the channel and binge watching the videos. That means a lot to me, thank you so much! I haven’t watch this video in a long time, but I should probably watch it and maybe make an updated version. I’m glad you were able to extract some value out of the video and learn more about RP and blindness. You’re right, just like you said, it was unfortunate to lose friends but at the same time they weren’t friends anyway. So, who cares. To answer your question, initially after the diagnosis I was mostly in denial because I didn’t think you would happen to me. I could see pretty well at the time and didn’t think anything whatever changes my vision. When I was in my mid to late 20s is when I saw the most change in my vision around the age 26 to 27. That’s on my vision got a lot worse pretty quickly. I would say there were definitely hard times throughout the years. There still are hard times but they are further in between. I have also found this channel to be very helpful throughout this whole process. Being able to connect with a bunch of other people on this channel who are in the same position or just great friends like you has made the process a lot easier for me. This channel has also been very therapeutic as I can talk and work through some of the issues where I was I never talked about anything before this channel. It’s also so much fun to be able to connect with others and get to know them share their stories, and get to know their life and experiences. It is been such a fun experience and I’m so happy that I created this channel. I can’t wait to see where it goes from here! Thank you again for being such a great friend and I hope I answered your questions with this comment. If not, feel free to ask more questions and I will be happy to answer them :-) thanks again for binge watching the videos, that means a lot to me! Talk to you again soon, Matt

[@Jailingfhdhd]

Blind to Billionaire Very well said! That is such a beautiful and positive perspective! It brings a smile to my face that this channel means so much to you as well as others. I’m glad you’re able to talk about these things that you weren’t able to talk about before you got your channel. I’m so happy that you are getting to connect with others! I’m so glad I found your channel and grateful that I have the opportunity to connect with you and get to know you as a person. Thank you for calling me a “great friend” You’re a great friend as well! I’ve never met you but I know you really are a very genuine and a very good person! Also, Am I the only non blind person watching and commenting on your videos? Lol Anyways, I have a lot of respect for you and the whole blind community! ❤️❤️❤️We are all people after all with a story to tell.

[@BlindtoBillionaire]

Hey Tori! Thank you very much, that is so sweet of you :-) yes, this channel has been such a fun and therapeutic part of my life. Initially I had no idea where I was going with it and didn’t have anyone watching the videos. But now 10 months later I have a huge network of great friends that I connect with daily like you that means so much to me. It is so much fun talking and getting to know everybody! I also feel like my videos are helping people since that is some of the feedback I’m also getting. LOL, you’re definitely not the only cited person watching these videos. My mom and dad watch them too. LOL. No, but really, there are other cited people watching this channel as well. I think it’s so cool that you enjoy watching these videos and take value from them even though you’re a sighted person and don’t have anything to do with retinitis pigmentosa. That just means you are a very thoughtful and empathetic person. Also a great friend :-) that is very true, we haven’t met but who knows, maybe someday we will! Hopefully it is on a cruise in the Caribbean :-) thanks again for being such a great friend and always being so respectful. You are a very special person! :-) Matt

[@eskandalo2291]

When you said running into things or kicking wet floor signs I died 😂🤣😂 because I go through the same thing to this day I hate those things! But I can definitely relate I got diagnosed when I was 15 also so my dreams of driving a car were crushed!!! anyways great content and I support

[@BlindtoBillionaire]

Good morning! LOL, I’m so glad you enjoyed the video, thank you so much for watching! Yes walking into things OK generally is definitely never fun, and certainly doesn’t happen all that often, but it does happen sometimes. I sincerely appreciate your friendship and support here, thank you so much :-) I hope you’re having a wonderful weekend, see you soon in the next video. Matt

[@eskandalo2291]

No problem great content, I was debating on whether or not to make a video about my condition and experience as a blind man in a big city. And I ultimately decided to make one it’s gonna be hard but good for me at the same time cheers 😂 keep up the good work

[@BlindtoBillionaire]

Hi, thanks so much for the nice words, that would be cool, you should definitely make a video about it :-) thank you once again for your continued support, have a wonderful evening and see you again tomorrow. Matt

[@rubycaskey7638]

hi matt i have rp but i also have double vision both eyes love you watch you all the time have had since i was a teenager

[@ppearn]

Hi. I have RP, I was diagnosed at age 13 in 1983, and was registered legally blind back in 2015. Do you find you are always tired? I can totally relate to everything that you said. Can you see stars in the night sky?

[@andrewdixon4427]

Hi friend I just happened to click on your video and saw all the things that you are going through, I am also having the Sam rp eye condition, I am now fifty two years of age and every thing that you mentioned in your video about the early simptoms, I have and still I'd experiencing, I live in Jamaica, please let me know if there is any treatment for this eye condition. My name is andrew please looking forward to hear from you

[@BlindtoBillionaire]

Hi Andrew! Thank you so much for watching this video and for reaching out to me in this comment, it is very nice to hear from you and meet you too! I am very excited to have you here! This is amazing community with a lot of blind and visually impaired people here, I think you’re going to love this community and I’m very happy to have you! Welcome, and thank you very much for subscribing. As for your question if there is a cure for retinitis pigmentosa, unfortunately, there is not a cure right now. However, there is a lot of exciting advancements going on in the medical field right now at revolving around retinitis pigmentosa and other blindness causing diseases. There are a lot of clinical trials happening and a lot of really great things happening Ning in the field, I think it’s only a matter of time before there is a cure. Until then, you have communities like this where you can connect with other blind and visually impaired people along with myself on a regular basis throughout the week. Thank you again, it is exciting to hear you are from Jamaica! Thank you very much, I have visited your island one time and it was fun there! Thank you again, I look forward to hearing from you sometime soon and thank you so much for being here on the channel, I sincerely appreciate your support! Matt

[@YeahNoyeah]

You've described my life story 🥺 I'm 18 now

[@BlindtoBillionaire]

Hi, thank you so much for watching this video! LOL, that is interesting that I described your life. Thanks for reaching out to me, it is nice to meet my clone! LOL. I hope all is well with you, happy new year! I look forward to hearing from you again sometime soon. Matt

[@YeahNoyeah]

@@BlindtoBillionaire Ty sm for responding bro I am an international swimmer. I swim open water but I had to stop cause of Rp..Ty SM for making this video.... appreciate seeing this video while I can

[@BlindtoBillionaire]

Hey my friend, I admire you for being a swimmer! LOL, I cannot swim unless I am about to drowned, then I can swim. LOL. You sound like an awesome person, I’m so happy that you were here on the channel and enjoying some of the videos, we will definitely keep them coming! Thanks again my friend, I look forward to hearing from you soon. Matt

[@YeahNoyeah]

@@BlindtoBillionaire will keep in touch, Gabe

[@BlindtoBillionaire]

Sounds great! Thanks for being here, I appreciate your friendship and support

[@ACCOMPLISHEDSHEIS]

Was it like this with glasses? Just wondering.

[@billmichels139]

Thanks so much for sharing your experience. Pretty much nailed my symptoms. Especially night blindness and the blotches. I was diagnosed with macular degeneration about 10 yrs ago. I’m 68 now and my RS just recently that I have RP. So it’s like a double wammy. I’m not sure how much pigment I have at this stage. I will ask nest visit. Oh and I’m monocular, my left eye is a prosthetic. Thanks again

[@BlindtoBillionaire]

Hi, you’re very welcome! I’m glad you enjoyed this video and found it to be helpful. I really appreciate you reaching out, it’s always nice to connect with other people who are blind or visually impaired, I’m always here for you if you ever need anything, please never hesitate to reach out to me. It’s always nice to connect with somebody else who truly understands. Have a nice day, I look forward to hearing from you

[@isadoracarneiro5971]

I'm famous for tripping on wet floor signs. I usually find very annoying that we usually come out to other as clumsy and zoned out people.

[@gojosatoru2942]

I feel you bro. I also have rp and im already 37 yo. And sadly its getting worst... The pheripheral vision is dead thats why...

[@DelackMediaGroup]

Thanks for sharing! Check out another RP story here: kzbin.info/www/bejne/imLVhYWgotakr6c

[@BlindtoBillionaire]

Hi! Thanks so much for checking out this video and leaving a link to your video, that is great. Thank you so much :-) it is great to have you here, I sincerely

[@EJAZ_ZIEY]

How was your progression now?

[@BlindtoBillionaire]

Good morning, thank you so much for reaching out. That's a really good question, this video is from quite a few years ago. I currently have light perception, in other words I can see very bright lights and that's about it, I don't really have any usable vision anymore. Hope that answers your question, thank you, I really appreciate your support. Matt

[@marwanal3780]

Hello Matt nice to see you in new Video I think alot off things I'm related into nigh blindness when I was 5 or 6 and nobody knows what's wrong they let me eat alot of carrots when I drop things sometimes I can't see it they think I'm not paying Attention . I hate the Yellow sing I always trip or him it lol honestly very nice talk and explain thank you Matt to let others understand What is RP you so great person say hi to Corey have wonderful night.

[@BlindtoBillionaire]

Hi Marwan! Thank you for the nice comment, it is nice to hear your story and perspective. Lol, Marwan, eat a lot of carrots! ;)It sound like we experienced many of the same symptoms when we were younger. I will definitely say hi to Corey for you... She always enjoys hearing from you! :) Thank you for being such a great friend and supporter of me and this channel, it truly means a lot to me!Have a nice day, it is so nice to hear from you again!Talk to you soon, Marwan!Matt

[@かすみ-l6e]

I just had an enbarising blind moment i turnd my dark screen on on my phone and couldnt turn it off so i called a volunteer on the be my eyes app but he tryed to help me but he dident know how to trun it off so i tryed the speshlelized help and they dident know ever but they did try to help me out tho and in the end i maniaged to turn it off by my self im really dum 😄😂😂😂😂😂😂😂 lol

[@BlindtoBillionaire]

LOL, you are funny. But it is OK that you called for assistance to help turn off dark mode on your phone. I’m glad you were able to figure it out by yourself. Thanks for sharing :-)