Hello Cayla, I am cordially impressed about the content of this Video because everything you addressed in the video is the exact copy of my personal situation. I have been living with with very advanced RP since my birth. But, I used to see things better during daytime in the past. I had no problem of differentiating colors in bright light and reading smaller Font prints including news papers by using the very narrow centeral vision i had before 2017. After 2017, everything turned to old history for me because my RP rapidly progressed and right now all i can see is just a foggy and snow colored space around me. The good thing happened to me after this rapid progression, I became a good friend with using my Cane and realized that the Cane is not just a mobility device but it is a good means of communication device and really help other people around you to be cautious before i bumbing to them. Even some are really happy to offer help and guide in the right way. Thus, everybody please be encouraged to use canes in public to minimize the stress that originating from runing in to obstacles on our ways.
Hey Cayla, very well said! I feel like this was a great description of retinitis pigmentosa and its progression. Great video, so nice to see you again! Matt
Cayla with a C good morning Cayla, correct, retinitis pigmentosa can be very difficult to explain. I think you did a great job talking about it and discussing the progression throughout your life. Have a nice Thursday! Matt
Oh boy, can I relate. In April 2016, at the beginning of my vision deterioration, I went from 20/40 to 20/80 and thought how much that sucked. However, now that I have settled at 20/400, I wish that I could see 20/80. That would be a real treat. And I also get how you say making things bigger does it make them better. Blurry letters are blurry letters
Hi Callie! I’m glad you can relate. Although I’m sorry to hear about your significant vision loss. I think we can all relate to wishing we had the vision we did before we started losing it. No mattter how bad it was to begin with it’s still better than what we have now
Fellow RP-er (Leber’s Amaurosis) here! I, too, was born with 20/200 vision but mine doesn’t seem to have deteriorated as rapidly as yours. It did start, owever, going downhill more quickly at about my early 20s. I now can still read print at about 7x/8x normal size with very high contrast. My vision is also quite dim now and my colors are off.
HEY CAYLA!! IT IS ALWAYS A PLEASURE TO SEE YOU, EVEN THOUGH IT IS NOT THE BEST. AND YOU HAVE SUCH A SWEET VOICE THAT MAKES IT EASY TO KNOW THAT IT IS YOU AND I ENJOY YOUR VOICE. I CAN DEFINITELY RELATE TO YOU IN ALL THAT YOU SAID. THE ONLY DIFFERENCE IN MY SITUATION WOULD BE THAT I COULD SEE MAYBE A LITTLE BETTER WHEN I WAS YOUNGER. BUT SINCE TURNING 40 AND NOW I AM 42, MY VISION HAS DECREASED ALMOST EVERY BIRTHDAY I HAVE IN SOME WAY OR ANOTHER. LIKE YOU SAID, THE FOG CONTINUES TO GET THICKER AND THICKER UNTIL YOU CAN'T SEE WHAT IS IN FRONT OF YOU. I TOO HAVE THE SAME PROBLEM WITH PICTURES TODAY LIKE YOU HAVE. I HAVE TO HAVE SOMEONE TELL ME WHAT IT IS A PICTURE OF OR WHAT IT IS. COLORS HAVE ALWAYS BEEN A TROUBLE SPOT FOR ME. BLUES, BLACKS, BROWNS, AND DARK COLORS ARE REALLY A PAIN IN THE BUTT!!!! LOL!!! IF I HAD TO DESCRIBE MY VISION, IT IS LIKE LOOKING THROUGH ONE EYE. MY LEFT EYE IS COMPLETELY GONE AND MY BRAIN HAS SHUT IT DOWN. SO I ONLY CAN SEE THROUGH MY RIGHT EYE, WHICH CONTINUES TO GET WORSE EVERY BIRTHDAY I HAVE AND THE FOG IS GETTING THICKER AND THICKER. I THINK YOU DID A AWESOME JOB DESCRIBING YOUR VISION FROM BEFORE AND NOW!! GREAT JOB HUN AND I DEFINITELY CAN RELATE TO ALL YOU SAID AND GOING THROUGH. THANK YOU FOR ANOTHER WONDERFUL VIDEO AND ALWAYS LOOKING FORWARD TO YOUR NEXT ONE. WISHING YOU ALL THE BEST IN ALL THAT YOU DO!!! SENDING YOU LOTS OF LOVE AND A GREAT BIG HUG.
Hi Steven! Thank you for another thoughtful comment. I always enjoy hearing from you. I’m glad you could relate, and I definitely feel you on the dark colors, those always gave me trouble too. And yes, I have to have people describe pictures to me. I am always thrusting my phone at my husband asking “what is this a picture of?” Lol
Hi cayla, i am also suffering from Retinitis Pigmentosa from the age of 15. I am 27 now, and have 70 percent vision. I can relate to everything that you are taking about. I hope we get a cure soon. Take care God Bless
I love your clear method of explaining What is so difficult to describe! you have a gift of speaking ! Thank you! BTW, I am 67 and just now reaching the stages of inability to read . I am hoping you have or planning to have a video on how you still accomplish things you love but in a different way. Good job!!
You know what you're not the only one and stories sometimes people I can lose a lot of vision and sometimes you have to be there before the mission tonight and then you have like something for the mission and I have it's nice to be thankful for the vision that we have some considered illegally blind
I really enjoyed this video. You and I have completely different eye diseases yet we are so relatable and so many ways. I have optic nerve atrophied and a disease called LHON. My eyeballs are perfectly healthy as well as my retinas. But still we have a lot of similar complaints when it comes to our vision loss. I cannot stand the color yellow any longer. When I first start losing my visual yellow was my go-to even when I came to eyeglasses for reflections and light sensitivity. But then I started to notice I could not see caution signs. I would constantly trip over the 3 ft tall ones they have it grocery stores. I would bump in a little kids that were wearing yellow. I just started to realize my brain did not want to notice yellow any longer. Then it started without the colors like blue and green. Or purple and brown or red and brown red and purple etc. I have currently a lime green toothbrush my son has a blue and my wife has a purple and I still have a hard time distinguishing the difference. There's only gotten worse with time. my vision was seem stable however I've noticed my color vision getting worse and worse. My go to is white on black. Contrast for me is everything with my vision loss. It's nice to know that all of us even though we have different eye diseases all in the end are still the same. We all deal with a lot of the same issues. You did a fantastic job explaining yourself I could not have done any better than this. Bravo
Thank you for such a thoughtful comment Vincent! It’s always great to hear from you. That is really interesting how we can have similar vision or progression even with completely different eye diseases. I feel you on the yellow. Yellow has always been hard for me to see, especially with a white background. Yes, white on black is the easiest for me to see too. I can still see red pretty vividly. It’s the only color that’s hanging on lol
Love your videos! I can relate to a lot of what you talk about. I was Legally Blind, and now Totally Blind. Yes, Legally Blind is way easier. Don’t get me wrong...it is all really hard to adapt to. I use tiny safety pins in the seams of my clothes to identify colors. I.e., Outer Right Shoulder means Black, Inner Right Shoulder means White, Inner Left Shoulder means Blue, etc. And, I have my closet organized by color with those plastic divider things separating them. Hope You Have an Awesome Day!! :-) xx
I think you did a great job at describing. I have some of these characteristics so far with my RP too. Mine is just maybe progressing a little slower. I will be 28 in April. Really enjoy your channel. You are beautiful!💜
Aw thank you Courtney! That is so sweet of you to say. I’m glad you can relate and thought I did a good job describing. I’m sure you know how difficult it can be for us to describe our vision
Hi! I can definitely relate with what you said,although I still have relatively good central vision ,of course I lost my peripheral vision. i can still walk without help of a cane or another person ,but I have a lot of problems due to lack of peripheral vision, the thing is that I stubbornly want to at least look like my vision is completely healthy and for that reason I do not care for myself and others as much as I would actually need. many times I hit or even knocked down person walking in my direction,a few weeks ago I knocked down a woman riding a bicycle, luckily nothing serious happened to her! I know I need to be a lot more careful, but , I am in a hurry all the time and that is not good. I wish you all the best! :)
Hi! I’m glad you can relate. I totally understand how it can be hard when you don’t have peripheral vision even when your central vision is still pretty good. I think that’s where the cane comes in handy because it can help you detect obstacles that are in your peripheral
Hello! I also have RP. I used to live in Southwest Virginia, but I moved to Las Vegas last year by myself. I needed to make a Brave and Bold move on my own, but that's another story. My vision has gotten a lot worse over the last decade and I was declared legally blind in 2004. One day there will be absolute hope for us, but in the meantime, I don't know what will happen, but I am going to take some alternate steps by sitting with Mother Ayahuasca this Christmas and see what comes of it. People like you are an inspiration!
Hi! Thank you! That is so sweet of you to say I’m an inspiration. That is quite the bold and brave move to relocate to Las Vegas on your own. Very impressive. I don’t think I could do something like that.
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Hi so i am also legally blind. I have retinopathy of prematurity and my sight goes down each year. I am happy to have found someone i can relate to who is a girl also. :)
Hi Kayla, this was an excellent video describing how you could see in the past compared to what you say now. I can relate to this at all levels. Particularly, people who have known me all of my life and at this point, that has been a long time because I am 61. But, I have people who have known me and still think that my vision should be 20/200 and they are startled when I explain that it has deteriorated over my many decades. I have had people question me about that as if it is just unbelievable or virtually impossible to have such a deterioration over time. Are usually laugh and explain that at age 15, I could do multiple back handsprings down the street and I can’t do that anymore either. LOL. I think after I say that, they get it. I truly have had to explain this concept many times over the past 10 to 15 years. Anyway, your descriptions and explanations are excellent and I relate to them so much. Thanks, Beverly
Hi Beverly! Thank you for another thoughtful comment. I always love hearing from you. I’m glad you can relate. I’m also glad to know I’m not the only one whose long-time family and friends still expect me to be able to see 20/200. It can be so frustrating to keep telling people that you can’t see those things anymore. And a lot of my friends and family seem to have amnesia where they forget that I told them I couldn’t see certain things, and next time I’m around them I have to have the same conversation all over again because there they are trying to show me a picture or asking me if I have my magnifier so I can read something
Cayla with a C you are right Kayla. I don’t know about you, but I have a real difficult time keeping my emotions in check during those situations. I tend to get my feelings hurt because I think that people who are close to me should be more sensitive to the fact that I have gone through a severe loss of sight and now I’m having to explain it over and over again. I don’t mind explaining vision loss to people that are interested or people who would like to know more about what it is like to be blind but it almost seems intentional, hurtful when it is asked over and over again from people who realize my gradual sight loss. I just don’t get it either. I do know some people who readily explain to me that they just forget that I can’t see but I know that that is a different feeling. My own husband forgets that I can’t see and to me that says that my blindness is really not an issue. But when you must tell other family members or close friends, continuously, no, I can’t see those pictures, Well, it almost borderlines on rudeness. Like, let’s just pass around the pictures and it doesn’t matter that Beverly is left out. Anyway, I get my feelings hurt sometimes and at other times it doesn’t bother me as bad. Thanks for sharing
Yes exactly!! I feel the same way. I also get my feelings hurt when people never seem to remember or think about it, and it feels like they just don’t care every time I have to tell them, because I think if they did care then they would remember it for next time. And yes, a room full of people passing around a picture and not one of them thinks to turn to you and tell you what it is. It’s so rude.
Cayla with a C OK, on this topic, yesterday I was at my eye doctors office, I go three times a year for her to check my corneas for dry eye. I’m sitting in the chair and we are just talking away and she realizes that she is waiting for me too put my chin in the little brace Winn she said that she forgot I can’t see! We both burst into laughter because in this case, I am blind, she is my eye doctor, and she forgot I can’t see so she was waiting for me to make the next move for her to continue the exam. Today however, about the photographs, I was sitting with my nail technician and another customer and we were all talking about how beautiful the golf beach is and my nail technician said she has a photograph of the water and the beach just taken yesterday. In this case however she described the photograph and the color of the water and the color of the sky and then after all of that she pulls the photograph out and lets the other customer see it. It’s just the opposite of what most people do and just the opposite of what we were just discussing. I told her that I very much appreciate her description and how thoughtful it was of her to paint me a verbal picture of her photo. Anyway, thanks for this conversation and sometimes it’s fun to just share these experiences with someone like you who can relate so well. Have a wonderful weekend!
Bama Blind lol that’s a pretty good story about your eye doctor. And I love that story of your nail lady describing the picture. And I love that she described it to you first before she showed everyone else. We are always the last to be let in on things, so that’s really awesome. It is so nice when little things like that happen. It really makes my day when someone who isn’t even very close to me is thoughtful like that
I don’t have RP, but my eye disease (diabetic retinopathy) is atypical and mimics it. I definitely can relate to not being able to tell the blue and green Uno cards! The yellow ones give me a hard time too. My boyfriend (who does have RP) has Braille Uno cards, but we used them so much, the Braille got pressed down. The irritating part about vision loss is people don’t understand that many eye conditions are degenerative.
Hi! I’m glad you can relate. Braille Uno cards sounds like a great idea. I need to get some. And I agree, it is very frustrating when people don’t realize that your eye disease is progressive and expects you to be able to see as well as you did in the past
This video brought back a lot of memories. I used to be so frustrated with my vision issues I actually wanted to be legally blind. I have low vision, but I have been told I am close to legally blind. This video made me realize how grateful I am to have the blurry vision I do have. I learned a lot about what it’s like to see with RP, which helps me be able to understand my friend, who is losing his vision to RP, much better. My one question I have about RP is does the act of losing your sight hurt?
Hi Amanda. I think it’s good for everyone to be thankful for the vision they have, no matter how bad it is. I’m glad I could help you to appreciate the vision you do have a little more. And I’m glad I can help you understand your friend’s situation a little better. Losing vision with RP doesn’t physically hurt, although I cannot speak for everyone. The only thing is that bright light hurts my eyes a lot more than it used to, and being outside on a very sunny day can be painful
Bloodshed إراقة الدماء I don’t have RP. I have Nystagmus. I do not have an income or health insurance. I was told I’m not blind enough to get any kind of help. I don’t get disability.
Wow, you really put it in perspective for me how different RP can be for people. Compared to you, I'm practically fully sighted, even though I can't drive anymore.
@@CaylawithaC Mine also progressed from my late teens. I had the night vision thing as a child, but that was it until I was older. It seems to have stabilised in recent years, but I'm told it will progress again sooner or later. I made a video on my personal experience recently, though it's very informal and not as polished as yours. I laughed out loud when you said "I'm looking at you wet floor signs" because I've mentioned them as my sworn enemies.
Could definitely relate to this. While I can still see color well I won’t be surprised if I start losing some of that as my RP progresses. One thing I’ve noticed over the years is the vision in my right eye decreasing faster. At this point I can’t see much detail in my right eye so it’s kind of just going along for the ride. I sometimes forget about it until I happen to close my left eye and notice how poor the vision is from that eye. Oh and assistive technology for the win lol. I’m gradually making that shift to using voiceOver for everything. I’m not there just yet but I’m realizing how used to it I’m getting. Zoom is awesome but I prefer having something read back to me while I’m not even glancing at the phone.
That’s good that you can still see color. I hope it sticks around. And my right eye is also my worse eye, and I’m pretty sure I remember Molly Burke saying that her right eye used to be a lot worse than the left too. Maybe that’s a thing lol. And yes, Apple makes it so easy to transition. It happened so gradually for me it’s hard to pinpoint when I actually started using voiceover full time.
Thank you for this video. I have Stargardt’s disease which is also a progressive condition and have experienced vision lost in my 68 years quite a bit also. I am also a teacher or a visually impaired students. Your description is very helpful to understand what others may go through with our PE. Thank you very much!
Marsha GA blind girl sargardts is also treated with sem cells of the same patient Células madre del Propio paciente para el páncreas, o diabetes Esclerosis múltiple y otras enfermedades de la Retina Regeneración de páncreas facebook.com/cientificomarioncamacho/videos/2073506792665700?vh=e&d=n&sfns=mo facebook.com/cientificomarioncamacho/videos/2132768123406233?vh=e&d=n&sfns=mo Proceso de células madre del propio paciente facebook.com/cientificomarioncamacho/videos/1762653680417681?vh=e&d=n&sfns=mo Degeneración Macular facebook.com/cientificomarioncamacho/videos/1615588898457494?vh=e&sfns=mo facebook.com/cientificomarioncamacho/videos/1754658037883912?vh=e&d=n&sfns=mo facebook.com/cientificomarioncamacho/videos/1831704950179220?vh=e&d=n&sfns=mo Retinitis pigmentosa facebook.com/cientificomarioncamacho/videos/1997767016906345?vh=e&d=n&sfns=mo facebook.com/cientificomarioncamacho/videos/2414046125497849?vh=e&d=n&sfns=mo Esclerosis múltiple Caso liz Villanueva facebook.com/cientificomarioncamacho/videos/1767590836590632?vh=e&d=n&sfns=mo facebook.com/cientificomarioncamacho/videos/1911795905503457?vh=e&d=n&sfns=mo Refresh neuronal facebook.com/cientificomarioncamacho/videos/1902015503148164?vh=e&d=n&sfns=mo facebook.com/cientificomarioncamacho/videos/1924172514265796?vh=e&d=n&sfns=mo facebook.com/cientificomarioncamacho/videos/1924156850934029?vh=e&d=n&sfns=mo
I can relate.. I got diagnosed with RP two months back. From last year my vision has changed so much. With in one year span of time, my vision has detoriated. I have ghost images and shadowing in the letters. I could see someone walking up to me but I can't recognise him or her. I have peripheral vision loss. Even though my central vision is very good but I have lost the clarity in the vision. I don't know what will happen from here and when I will have complete vision loss but we shld keep fighting.
I to have a RP and I can relate to everything you said. I am at the point where I can’t read or see photos so I definitely get when you said you get mad that they send you photos without a caption because that happens to me all the time.
Deb H9250 i’m glad you can relate. I know how frustrating that can be. I think it’s hard for people to adjust to our vision changing and they are stuck thinking that it’s the same as it’s always been
Hey Cayla good job with the videos , I also have RP . I agree there is a lot of senceless people out there who ask really stupid questions lol . I think everyone has to be more educated on vision loss and how ppl have diff stages of vision .
Hi Troy! Thank you! Yes, I definitely agree, people need to be more educated about vision loss. That’s one thing I hope to accomplish with this channel
SOoo many acquaintances want me to recognize them after seeing them just 2 or 3 times and get upset when I can't tell who they are! Please just tell me who you are.
Hi Miss Cayla i have also RP i only know it a month ago my left eye is 0 and my right have 10 percent. I use corrective lens.The doctor said i just to take vitamins rich in A to not make it worser
I don't have RP, I have another thing. My current degree of vision is like your vision during your teens. A key difference is, I can see in the dark. I get more light into my eyes because my retinas are open. Summer days are a nightmare. I use my magnifier glass for everything and screens have to touch my face. I have no idea how people recognise faces.
Hi! That’s really interesting that your vision is similar to how mine was. But how cool that you can see in the dark! I can’t even wrap my head around what that would be like. It sounds kind of like a super power to me lol. And yes, I don’t know how people recognize faces either. That’s another super power that I can’t wrap my head around
@@sannaslife6395 I have amblyopia i don't have Binocular depth perception but i have monocular cues depth perception so it is safe to drive a car etc but i cannot play tennis basket ball and certain sports
I was like that I have RP and I couldn't really see out of my left eye it was like looking through a curtain. I found out that I had a severe cataract as well on that eye. I had it removed and after over 10 years of not seeing much out of that eye I can see again. The cataract was so dense probably from straining my eyes so much. My field of vision is about 17 percent but at least now it's clear.
I’ve heard that cataracts can be common with RP. Thankfully I haven’t had any. But that’s great that you were able to have it removed and can see better!
well, i have the same eye problem. it is retinitis pigmentosa sine pigmento. i dont know, but it is so bad. im just scared that i will be really blind. damn... you know, its nice to see you.- Aldo
There are peaople who have seen 20/20 or better who are around 20/200 and would completely disagree that 20/200 is wonderful vision. I understand from your view point it is much better to what you are seeeing these days. :/
They have to draw the line somewhere and some people may have field deficits and other issues. My one eye is blind nad my other is visually imapired. I was born this way except I lost some vision last year. I don't know why.
Can that's not old you're young you know and then I want you're motivating me to do videos Blind thank you for motivating me I love you you're young you aren't we 27 and that's you because I am 19 years old only 20 next year
Lol. It’s all relative. I think everyone feels old when it’s them. I bet you felt old when you were 27. I feel like it was just yesterday when I was 17
Hello Cayla, I am cordially impressed about the content of this Video because everything you addressed in the video is the exact copy of my personal situation. I have been living with with very advanced RP since my birth. But, I used to see things better during daytime in the past. I had no problem of differentiating colors in bright light and reading smaller Font prints including news papers by using the very narrow centeral vision i had before 2017. After 2017, everything turned to old history for me because my RP rapidly progressed and right now all i can see is just a foggy and snow colored space around me. The good thing happened to me after this rapid progression, I became a good friend with using my Cane and realized that the Cane is not just a mobility device but it is a good means of communication device and really help other people around you to be cautious before i bumbing to them. Even some are really happy to offer help and guide in the right way.
Thus, everybody please be encouraged to use canes in public to minimize the stress that originating from runing in to obstacles on our ways.
I’m sorry that you had to go through that, but I’m glad you can relate. And yes, Keynes can be helpful in multiple ways
Hey Cayla, very well said! I feel like this was a great description of retinitis pigmentosa and its progression. Great video, so nice to see you again! Matt
Thanks Matt! I’m glad you thought I did a good job describing RP. I’m sure you know that is no easy task. It’s always great to hear from you!
Cayla with a C good morning Cayla, correct, retinitis pigmentosa can be very difficult to explain. I think you did a great job talking about it and discussing the progression throughout your life. Have a nice Thursday! Matt
@@BlindtoBillionaire itr no more diffggpcult now. As RP is cureable now within a year. Contact +917022543949
@@CaylawithaC can I have your email address or contact no?
Oh boy, can I relate. In April 2016, at the beginning of my vision deterioration, I went from 20/40 to 20/80 and thought how much that sucked. However, now that I have settled at 20/400, I wish that I could see 20/80. That would be a real treat. And I also get how you say making things bigger does it make them better. Blurry letters are blurry letters
Hi Callie! I’m glad you can relate. Although I’m sorry to hear about your significant vision loss. I think we can all relate to wishing we had the vision we did before we started losing it. No mattter how bad it was to begin with it’s still better than what we have now
Fellow RP-er (Leber’s Amaurosis) here! I, too, was born with 20/200 vision but mine doesn’t seem to have deteriorated as rapidly as yours. It did start, owever, going downhill more quickly at about my early 20s. I now can still read print at about 7x/8x normal size with very high contrast. My vision is also quite dim now and my colors are off.
HEY CAYLA!!
IT IS ALWAYS A PLEASURE TO SEE YOU, EVEN THOUGH IT IS NOT THE BEST. AND YOU HAVE SUCH A SWEET VOICE THAT MAKES IT EASY TO KNOW THAT IT IS YOU AND I ENJOY YOUR VOICE.
I CAN DEFINITELY RELATE TO YOU IN ALL THAT YOU SAID. THE ONLY DIFFERENCE IN MY SITUATION WOULD BE THAT I COULD SEE MAYBE A LITTLE BETTER WHEN I WAS YOUNGER. BUT SINCE TURNING 40 AND NOW I AM 42, MY VISION HAS DECREASED ALMOST EVERY BIRTHDAY I HAVE IN SOME WAY OR ANOTHER. LIKE YOU SAID, THE FOG CONTINUES TO GET THICKER AND THICKER UNTIL YOU CAN'T SEE WHAT IS IN FRONT OF YOU. I TOO HAVE THE SAME PROBLEM WITH PICTURES TODAY LIKE YOU HAVE. I HAVE TO HAVE SOMEONE TELL ME WHAT IT IS A PICTURE OF OR WHAT IT IS. COLORS HAVE ALWAYS BEEN A TROUBLE SPOT FOR ME. BLUES, BLACKS, BROWNS, AND DARK COLORS ARE REALLY A PAIN IN THE BUTT!!!! LOL!!!
IF I HAD TO DESCRIBE MY VISION, IT IS LIKE LOOKING THROUGH ONE EYE. MY LEFT EYE IS COMPLETELY GONE AND MY BRAIN HAS SHUT IT DOWN. SO I ONLY CAN SEE THROUGH MY RIGHT EYE, WHICH CONTINUES TO GET WORSE EVERY BIRTHDAY I HAVE AND THE FOG IS GETTING THICKER AND THICKER.
I THINK YOU DID A AWESOME JOB DESCRIBING YOUR VISION FROM BEFORE AND NOW!! GREAT JOB HUN AND I DEFINITELY CAN RELATE TO ALL YOU SAID AND GOING THROUGH. THANK YOU FOR ANOTHER WONDERFUL VIDEO AND ALWAYS LOOKING FORWARD TO YOUR NEXT ONE. WISHING YOU ALL THE BEST IN ALL THAT YOU DO!!! SENDING YOU LOTS OF LOVE AND A GREAT BIG HUG.
Hi Steven! Thank you for another thoughtful comment. I always enjoy hearing from you. I’m glad you could relate, and I definitely feel you on the dark colors, those always gave me trouble too. And yes, I have to have people describe pictures to me. I am always thrusting my phone at my husband asking “what is this a picture of?” Lol
Hi cayla, i am also suffering from Retinitis Pigmentosa from the age of 15. I am 27 now, and have 70 percent vision. I can relate to everything that you are taking about. I hope we get a cure soon. Take care God Bless
Hi! Thank you. I’m glad you can relate ❤️
Hello dear friend it’s Jon
My vision is blurry now so I use my cane and my glasses don’t work anymore.
I’ll be praying for us all my friends on here 😊
I love your clear method of explaining What is so difficult to describe! you have a gift of speaking ! Thank you! BTW, I am 67 and just now reaching the stages of inability to read . I am hoping you have or planning to have a video on how you still accomplish things you love but in a different way. Good job!!
Thank you!! I actually did make a video not too long ago about activities I enjoy even though I’m blind
You know what you're not the only one and stories sometimes people I can lose a lot of vision and sometimes you have to be there before the mission tonight and then you have like something for the mission and I have it's nice to be thankful for the vision that we have some considered illegally blind
I really enjoyed this video. You and I have completely different eye diseases yet we are so relatable and so many ways. I have optic nerve atrophied and a disease called LHON. My eyeballs are perfectly healthy as well as my retinas. But still we have a lot of similar complaints when it comes to our vision loss.
I cannot stand the color yellow any longer. When I first start losing my visual yellow was my go-to even when I came to eyeglasses for reflections and light sensitivity. But then I started to notice I could not see caution signs. I would constantly trip over the 3 ft tall ones they have it grocery stores. I would bump in a little kids that were wearing yellow. I just started to realize my brain did not want to notice yellow any longer. Then it started without the colors like blue and green. Or purple and brown or red and brown red and purple etc. I have currently a lime green toothbrush my son has a blue and my wife has a purple and I still have a hard time distinguishing the difference. There's only gotten worse with time. my vision was seem stable however I've noticed my color vision getting worse and worse.
My go to is white on black. Contrast for me is everything with my vision loss.
It's nice to know that all of us even though we have different eye diseases all in the end are still the same. We all deal with a lot of the same issues.
You did a fantastic job explaining yourself I could not have done any better than this. Bravo
Thank you for such a thoughtful comment Vincent! It’s always great to hear from you. That is really interesting how we can have similar vision or progression even with completely different eye diseases. I feel you on the yellow. Yellow has always been hard for me to see, especially with a white background. Yes, white on black is the easiest for me to see too. I can still see red pretty vividly. It’s the only color that’s hanging on lol
Love your videos! I can relate to a lot of what you talk about. I was Legally Blind, and now Totally Blind. Yes, Legally Blind is way easier. Don’t get me wrong...it is all really hard to adapt to. I use tiny safety pins in the seams of my clothes to identify colors. I.e., Outer Right Shoulder means Black, Inner Right Shoulder means White, Inner Left Shoulder means Blue, etc. And, I have my closet organized by color with those plastic divider things separating them. Hope You Have an Awesome Day!! :-) xx
Thank you! I’m so glad you enjoy my videos and that you can relate. That’s a really creative system, I may have to try that.
Hello dear friend it’s Jon I’m sorry with my heart go’s out to you.
My vision has gotten worse to.
I think you did a great job at describing. I have some of these characteristics so far with my RP too. Mine is just maybe progressing a little slower. I will be 28 in April. Really enjoy your channel. You are beautiful!💜
Aw thank you Courtney! That is so sweet of you to say. I’m glad you can relate and thought I did a good job describing. I’m sure you know how difficult it can be for us to describe our vision
Cayla with a C it's not easy to describe your mission to sighted people on a daily basis and to go through with yourself
Hi! I can definitely relate with what you said,although I still have relatively good central vision ,of course I lost my peripheral vision. i can still walk without help of a cane or another person ,but I have a lot of problems due to lack of peripheral vision, the thing is that I stubbornly want to at least look like my vision is completely healthy and for that reason I do not care for myself and others as much as I would actually need. many times I hit or even knocked down person walking in my direction,a few weeks ago I knocked down a woman riding a bicycle, luckily nothing serious happened to her! I know I need to be a lot more careful, but , I am in a hurry all the time and that is not good. I wish you all the best! :)
Hi! I’m glad you can relate. I totally understand how it can be hard when you don’t have peripheral vision even when your central vision is still pretty good. I think that’s where the cane comes in handy because it can help you detect obstacles that are in your peripheral
Yeah I understand cuz I have no vision so okay I understand or to be willingly behind
You sound like me w my vision I'm the same w fonts too I have permanent optic nerve damage in both eyes from brain durgeries when I was younger
Hello! I also have RP. I used to live in Southwest Virginia, but I moved to Las Vegas last year by myself. I needed to make a Brave and Bold move on my own, but that's another story. My vision has gotten a lot worse over the last decade and I was declared legally blind in 2004. One day there will be absolute hope for us, but in the meantime, I don't know what will happen, but I am going to take some alternate steps by sitting with Mother Ayahuasca this Christmas and see what comes of it. People like you are an inspiration!
Hi! Thank you! That is so sweet of you to say I’m an inspiration. That is quite the bold and brave move to relocate to Las Vegas on your own. Very impressive. I don’t think I could do something like that.
@@CaylawithaC I'm a nomad and I treat life as an adventure. I'll always find a way to get around.
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Hi so i am also legally blind. I have retinopathy of prematurity and my sight goes down each year. I am happy to have found someone i can relate to who is a girl also. :)
Hi! So glad that you found my channel and are able to relate ❤️
Hi Kayla, this was an excellent video describing how you could see in the past compared to what you say now. I can relate to this at all levels. Particularly, people who have known me all of my life and at this point, that has been a long time because I am 61. But, I have people who have known me and still think that my vision should be 20/200 and they are startled when I explain that it has deteriorated over my many decades. I have had people question me about that as if it is just unbelievable or virtually impossible to have such a deterioration over time. Are usually laugh and explain that at age 15, I could do multiple back handsprings down the street and I can’t do that anymore either. LOL. I think after I say that, they get it. I truly have had to explain this concept many times over the past 10 to 15 years. Anyway, your descriptions and explanations are excellent and I relate to them so much. Thanks, Beverly
Hi Beverly! Thank you for another thoughtful comment. I always love hearing from you. I’m glad you can relate. I’m also glad to know I’m not the only one whose long-time family and friends still expect me to be able to see 20/200. It can be so frustrating to keep telling people that you can’t see those things anymore. And a lot of my friends and family seem to have amnesia where they forget that I told them I couldn’t see certain things, and next time I’m around them I have to have the same conversation all over again because there they are trying to show me a picture or asking me if I have my magnifier so I can read something
Cayla with a C you are right Kayla. I don’t know about you, but I have a real difficult time keeping my emotions in check during those situations. I tend to get my feelings hurt because I think that people who are close to me should be more sensitive to the fact that I have gone through a severe loss of sight and now I’m having to explain it over and over again. I don’t mind explaining vision loss to people that are interested or people who would like to know more about what it is like to be blind but it almost seems intentional, hurtful when it is asked over and over again from people who realize my gradual sight loss. I just don’t get it either. I do know some people who readily explain to me that they just forget that I can’t see but I know that that is a different feeling. My own husband forgets that I can’t see and to me that says that my blindness is really not an issue. But when you must tell other family members or close friends, continuously, no, I can’t see those pictures, Well, it almost borderlines on rudeness. Like, let’s just pass around the pictures and it doesn’t matter that Beverly is left out. Anyway, I get my feelings hurt sometimes and at other times it doesn’t bother me as bad. Thanks for sharing
Yes exactly!! I feel the same way. I also get my feelings hurt when people never seem to remember or think about it, and it feels like they just don’t care every time I have to tell them, because I think if they did care then they would remember it for next time. And yes, a room full of people passing around a picture and not one of them thinks to turn to you and tell you what it is. It’s so rude.
Cayla with a C OK, on this topic, yesterday I was at my eye doctors office, I go three times a year for her to check my corneas for dry eye. I’m sitting in the chair and we are just talking away and she realizes that she is waiting for me too put my chin in the little brace Winn she said that she forgot I can’t see! We both burst into laughter because in this case, I am blind, she is my eye doctor, and she forgot I can’t see so she was waiting for me to make the next move for her to continue the exam. Today however, about the photographs, I was sitting with my nail technician and another customer and we were all talking about how beautiful the golf beach is and my nail technician said she has a photograph of the water and the beach just taken yesterday. In this case however she described the photograph and the color of the water and the color of the sky and then after all of that she pulls the photograph out and lets the other customer see it. It’s just the opposite of what most people do and just the opposite of what we were just discussing. I told her that I very much appreciate her description and how thoughtful it was of her to paint me a verbal picture of her photo. Anyway, thanks for this conversation and sometimes it’s fun to just share these experiences with someone like you who can relate so well. Have a wonderful weekend!
Bama Blind lol that’s a pretty good story about your eye doctor. And I love that story of your nail lady describing the picture. And I love that she described it to you first before she showed everyone else. We are always the last to be let in on things, so that’s really awesome. It is so nice when little things like that happen. It really makes my day when someone who isn’t even very close to me is thoughtful like that
I don’t have RP, but my eye disease (diabetic retinopathy) is atypical and mimics it. I definitely can relate to not being able to tell the blue and green Uno cards! The yellow ones give me a hard time too. My boyfriend (who does have RP) has Braille Uno cards, but we used them so much, the Braille got pressed down.
The irritating part about vision loss is people don’t understand that many eye conditions are degenerative.
Hi! I’m glad you can relate. Braille Uno cards sounds like a great idea. I need to get some. And I agree, it is very frustrating when people don’t realize that your eye disease is progressive and expects you to be able to see as well as you did in the past
This video brought back a lot of memories. I used to be so frustrated with my vision issues I actually wanted to be legally blind. I have low vision, but I have been told I am close to legally blind. This video made me realize how grateful I am to have the blurry vision I do have.
I learned a lot about what it’s like to see with RP, which helps me be able to understand my friend, who is losing his vision to RP, much better.
My one question I have about RP is does the act of losing your sight hurt?
Hi Amanda. I think it’s good for everyone to be thankful for the vision they have, no matter how bad it is. I’m glad I could help you to appreciate the vision you do have a little more. And I’m glad I can help you understand your friend’s situation a little better. Losing vision with RP doesn’t physically hurt, although I cannot speak for everyone. The only thing is that bright light hurts my eyes a lot more than it used to, and being outside on a very sunny day can be painful
Cayla with a C Thanks for answering my question.
Bloodshed إراقة الدماء I don’t have RP. I have Nystagmus. I do not have an income or health insurance. I was told I’m not blind enough to get any kind of help. I don’t get disability.
Bloodshed إراقة الدماء Nice to meet you. I will subscribe to your channel. It is hard, but I am so blessed.
Wow, you really put it in perspective for me how different RP can be for people. Compared to you, I'm practically fully sighted, even though I can't drive anymore.
Yeah there definitely is a very large spectrum. I was already legally blind from birth and have lost a lot of vision along the way
@@CaylawithaC Mine also progressed from my late teens. I had the night vision thing as a child, but that was it until I was older. It seems to have stabilised in recent years, but I'm told it will progress again sooner or later.
I made a video on my personal experience recently, though it's very informal and not as polished as yours. I laughed out loud when you said "I'm looking at you wet floor signs" because I've mentioned them as my sworn enemies.
That’s good that yours is stable. Mine was for a while too. We never really know what it’s going to do. And that’s great that you made your own video!
I am 21 years old and yet I feel old.
I have seen many good and evil things in this world and yet here I am period
Could definitely relate to this. While I can still see color well I won’t be surprised if I start losing some of that as my RP progresses.
One thing I’ve noticed over the years is the vision in my right eye decreasing faster. At this point I can’t see much detail in my right eye so it’s kind of just going along for the ride. I sometimes forget about it until I happen to close my left eye and notice how poor the vision is from that eye.
Oh and assistive technology for the win lol. I’m gradually making that shift to using voiceOver for everything. I’m not there just yet but I’m realizing how used to it I’m getting. Zoom is awesome but I prefer having something read back to me while I’m not even glancing at the phone.
That’s good that you can still see color. I hope it sticks around. And my right eye is also my worse eye, and I’m pretty sure I remember Molly Burke saying that her right eye used to be a lot worse than the left too. Maybe that’s a thing lol. And yes, Apple makes it so easy to transition. It happened so gradually for me it’s hard to pinpoint when I actually started using voiceover full time.
Thank you for this video. I have Stargardt’s disease which is also a progressive condition and have experienced vision lost in my 68 years quite a bit also. I am also a teacher or a visually impaired students. Your description is very helpful to understand what others may go through with our PE. Thank you very much!
Thank you! I’m so glad you were able to relate and that this helped you to understand your students with RP ❤️
Marsha GA blind girl sargardts is also treated with sem cells of the same patient
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I can relate.. I got diagnosed with RP two months back. From last year my vision has changed so much. With in one year span of time, my vision has detoriated. I have ghost images and shadowing in the letters. I could see someone walking up to me but I can't recognise him or her. I have peripheral vision loss. Even though my central vision is very good but I have lost the clarity in the vision. I don't know what will happen from here and when I will have complete vision loss but we shld keep fighting.
I’m glad you can relate. It’s tough but we’ll get through it
I to have a RP and I can relate to everything you said. I am at the point where I can’t read or see photos so I definitely get when you said you get mad that they send you photos without a caption because that happens to me all the time.
Deb H9250 i’m glad you can relate. I know how frustrating that can be. I think it’s hard for people to adjust to our vision changing and they are stuck thinking that it’s the same as it’s always been
Hey cayla I'm from Mumbai, India. I taking stem cell therapy from India and I feel improvement in my vision in 3 months.
I’m glad to hear that’s working well for you
@@CaylawithaC i advised you to take stem cells treatment for save your vision.
Hey Cayla good job with the videos , I also have RP . I agree there is a lot of senceless people out there who ask really stupid questions lol . I think everyone has to be more educated on vision loss and how ppl have diff stages of vision .
Hi Troy! Thank you! Yes, I definitely agree, people need to be more educated about vision loss. That’s one thing I hope to accomplish with this channel
Cayla you are beautiful inside and out, and inspiring.
Thank you so much! That’s so sweet!
SOoo many acquaintances want me to recognize them after seeing them just 2 or 3 times and get upset when I can't tell who they are! Please just tell me who you are.
Yes I agree, that’s so frustrating!
Kayla I'm 21 and I feel all even though I lucky on
Hi Miss Cayla i have also RP i only know it a month ago my left eye is 0 and my right have 10 percent. I use corrective lens.The doctor said i just to take vitamins rich in A to not make it worser
Hello! I wish you the best of luck. I hope the vitamins work for you
Miss Cayla does your doctor give you vitamins to take?
Clint P. No he does not. He said they wouldn’t really help me
My right eye is 20/200 w corrective lenses
What app do you use to read everything on your phone?
I don't have RP, I have another thing. My current degree of vision is like your vision during your teens. A key difference is, I can see in the dark. I get more light into my eyes because my retinas are open. Summer days are a nightmare.
I use my magnifier glass for everything and screens have to touch my face.
I have no idea how people recognise faces.
Hi! That’s really interesting that your vision is similar to how mine was. But how cool that you can see in the dark! I can’t even wrap my head around what that would be like. It sounds kind of like a super power to me lol. And yes, I don’t know how people recognize faces either. That’s another super power that I can’t wrap my head around
You are a wonderful person and friend
Thank you Travis! You are so kind
I hope you will keep posting more videos.
Thank you. I definitely don’t have any plans to stop
Can you please make a video on depth perception
Because I don’t know how to explain to people how I feel
@@sannaslife6395 I have amblyopia i don't have Binocular depth perception but i have monocular cues depth perception so it is safe to drive a car etc but i cannot play tennis basket ball and certain sports
Hi Sanna! Thank you for the suggestion. I think that would be an interesting topic
God bless you for sharing!
Thank you ❤️
I was like that I have RP and I couldn't really see out of my left eye it was like looking through a curtain. I found out that I had a severe cataract as well on that eye. I had it removed and after over 10 years of not seeing much out of that eye I can see again. The cataract was so dense probably from straining my eyes so much. My field of vision is about 17 percent but at least now it's clear.
I’ve heard that cataracts can be common with RP. Thankfully I haven’t had any. But that’s great that you were able to have it removed and can see better!
well, i have the same eye problem. it is retinitis pigmentosa sine pigmento. i dont know, but it is so bad. im just scared that i will be really blind. damn... you know, its nice to see you.- Aldo
ETL I know it’s scary. I’m sorry
@@CaylawithaC yeah, but i feel better, you know, when i found RP family group. So happy to know them, and you of course 😊.
ETL so glad you are feeling better, and glad to have you here on the channel ❤️
There are peaople who have seen 20/20 or better who are around 20/200 and would completely disagree that 20/200 is wonderful vision. I understand from your view point it is much better to what you are seeeing these days. :/
They have to draw the line somewhere and some people may have field deficits and other issues. My one eye is blind nad my other is visually imapired. I was born this way except I lost some vision last year. I don't know why.
I definitely agree. I never claimed that 20/200 vision was objectively good vision, it’s just much better than what I have now
You’re encouraging me to open my RUclips channel.
That’s awesome! Go for it! I wish you the best of luck
Hello, my girlfriend has the same case. Your eyes and how it move, it seems like you still have a good vision. May I ask, why do you wear eye glasses?
That’s a question I get asked a lot. I actually made a video talking about it ruclips.net/video/Lhun48MI6HI/видео.html
My condition is Bali fetal syndrome so I do not have Orapi sad
What app so u use to read everything on your phone?
I use voiceover. It’s an accessibility feature that comes on every apple product, including IPhone
I have an android would it be the same?
CPR Computer I believe it has a very similar feature. I think it’s called talkback
Cayla I Definitely know what you mean 😊👋
I’m glad you understand. It can be hard to find people who do
My eyes are starting to get worse going through alot of changes scary
I’m sorry. I know that can be scary. Hang in there
Jesus will heal you.. I will pray for you..
Have you ever had depth perception? If so, do you still have depth perception?
No, I’ve never had depth perception. I always forget to mention that when I’m describing my vision, I guess because I’ve never had it lol
Cayla with a C is this a common thing for people with Retinitis Pigmentosa?
Emma Harper I believe it is pretty common
Can that's not old you're young you know and then I want you're motivating me to do videos Blind thank you for motivating me I love you you're young you aren't we 27 and that's you because I am 19 years old only 20 next year
sounds like my vision
I’m glad you can relate
27 sounds old???? Lol!!! I am almost twice your age so I wish I could be so “old”! 🤣
Lol. It’s all relative. I think everyone feels old when it’s them. I bet you felt old when you were 27. I feel like it was just yesterday when I was 17
Can I add you on Facebook?
I actually don’t have a Facebook for my channel. The best way to connect with me is on Twitter @its_CaylawithaC