Early Signs of Retinitis Pigmentosa in Childhood + What Is RP?
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- Опубликовано: 13 авг 2018
- In this video I talk about the science behind Retinitis Pigmentosa. I also talk about the signs of RP that I experienced in childhood, which lead me to being diagnosed at the age of 4.
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/ its_caylawithac
I have RP..I was able to drive when I was 14 up until 4 years ago. I miss it alot being independant but it deteriorated more when I had my children. I dont regret them but that's when i noticed not being able to drive at night at first then limited day driving. I made the decision to stop driving when I got into a minor accident. I thought I didnt want to take my life or anyone by taking risks. I enjoy your videos. I wish I had courage to be a youtuber and share my story or struggles with RP.
Melanie Redhouse i’m sure that was a really hard decision to make, but I think you made the right decision to keep everyone safe. Maybe you will have the courage to share your story someday. Sometimes it just takes time to get there. Two years ago I would’ve panicked at the thought of sharing my story and struggles so openly.
Cayla with a C I do openly tell people and am not shy bout it. My brother and I both have the gene. I'm willing to learn using blind tools and technology. I stand out at college due to my white cane. But many people in my town aren't used to seeing any blind individual. People always tell me other people stare yet I dont notice lol. But I also am Native American and when I go into my reservation most natives aren't used to seeing that because it's more rural. My brother was never able to drive as well
Melanie Redhouse that’s good that you are open about it. People also tell me that I get stared at a lot when I’m using my cane, but I can’t see them
Cayla with a C Could we hear from your parents, sort of their take on how RP affected you when you were growing up?
Phil Pearn I do plan on doing that in the future
I definitely think that was very crafty of you to come up with a way of crawling and doing steps safely when you were so young.
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I was diagnosed with RP at age 9, but my night blindness was apparent at age 4 onward. I appreciate you making content about RP, as it is relatively rare and not publicly well known.
Serena Jeanne Thanks so much for your comment! I’m hoping to spread the word about RP so people will know more about it. Though I’m finding so many people on here who have it too, it doesn’t seem as rare as I thought
Retinitis Pigmentosa is treatable
Thank you, Cayla.
This helps me refresh understanding of low vision in children. There's a child in my life that may have RP, so this has been helpful.
This was a good overview of RP. Btw that's a really good technique you mentioned when you were a toddler. That's actually pretty impressive.
Thank you. As an adult, my brother developed RP. You've given me more insight into his world.
So glad to hear that!
I was diagnosed in my 40s. I wish you the best 🙏❤️🙏
I can’t believe it, you explain it exactly as I do. I have been watching your videos and we are so similar.
I am so glad you are able to relate ❤️
I See me in yourself. I am also a cancer survivor. Your eyes have priceless vision about the world and you are the beautiful women I saw; Such a honour to see your face. Keep going do everything 💫💗
Aw thank you so much for such sweet words ❤️
Thanks Calya. I will post this on Blind Awareness page :)
Thank you for this video. I was diagnosed with RP at age 34. I had to stop driving at that time too. And experienced all those signs too. Thank yiu
Great video! You actually went into the cones and rods, I thought of doing that but I was like I’m just gonna put it plain and simple not used to many scientific terms that I may have to explain what they are LOL yes depth perception is also hey symptom when it snows it’s hard to tell if it’s a big pile or if it’s just a small layer of snow covering the sidewalk LOL can’t tell you how many times I tried walking through a big pile of snow thinking it was just a small layer when I didn’t use my caneLOL
And it’s actually kind of funny how when my night blindness got worse I hated it when it got dark but as I began to lose my vision overall I preferred the dark because it was easier to use my cane then during the day when the glare would hurt my eyes and I still tried to rely on the vision I had which was basically just distracting me from actually relying on my cane.
I’m 19 and was diagnosed 10+ years ago. I’ve been limited my entire life on what I can do as well and it sucks so much, I can’t drive nor see in the dark as well so I can’t go get a job and it has really been getting to me because I’m stuck and don’t know what to do :(
You are not stuck. There are so much available today than long ago. The brain is the most valuable asset and if you master any particular subject of interest, then you will build a career out of it. Explore and explore hard. Never stop learning. Never let anything hold you back.
Hey, it was nice seeing you explaining the signs of RP, I have RP and want to ask some questions from you.
Sure. Ask away and I will do my best to answer
@@CaylawithaC what test should I take for the peripheral vision?
Thank you for sharing this video because everything you just explain it I'm going through it didn't happen until I was forty but it is exactly what I'm going through thank you
You just described my son’s symptoms 😭 I just found out that my boy has RP 😔 Thank you for the video!
Make him strong man for future.
Thank you, for the information. You're a pretty Woman. 💙
You are welcome! And thank you for the compliment
Hi, I'm 42 Rp and I'm married, have a son he's 16. I'm visually impaired well I can see but I can't. As you mentioned I also feel more confident at my home even in my hometown I don't use white cane. But when I'm going out of my town I hace to accept and learn to use the cane.
As you said there's a lot of types of RP - I have (thank God) sllower one. I never give up and try to be optimistic, if I have a problem I try to overcome it. If I need a help just ask for it. Regards.
Hi Cayla. Thanks very much for your videos! They were very helpful (and enjoyable!) in helping me learn about and prepare for a study I'm undertaking with RP patients in Japan to learn about their experiences. I wonder what cultural differences there are with RP experiences...
unit3942 i’m so glad you found my videos enjoyable and helpful! That would be interesting to know about any cultural differences. Good luck with your study!
By the way I find it brilliant how you were able to get down the steps backwards because when I'm climbing on stuff that's how I get down I sit down and I just know use my legs to get me down word
Another great video! My son's bff is an occuloplastic surgeon. I'm constantly asking him questions about RP and reminding him to advocate for research on possible improvements. He says they are making great strides in retina transplants for vision improvements in RP. Would you ever be open to that if the technique was proven safe and effective?
Carla Sanders I would definitely consider it, but even safe and effective procedures still have risks.
I'm curious... anyone with RP... Have you had cataract or lens replacement surgery done? If not, have you ever asked your doctor if they see ANY level of cataract or PCO in your eyes? This is one area where none of my doctors mentioned about it because they were all focusing on our retinas. Not realizing what's in front of the retina is hindering/blocking of our impaired vision.
Bless you. My bf has it and you really gave me insight.
Chick andCoop i’m so glad I was able to help ❤️
@@CaylawithaC thank you ❤
Man I have this too got it from my father over the years my eyes get worser now I'm seeing blearly and glossy especially outside can't read signs can't drive hard to walk somewhere very hard to work at a job I got diagnosed at 8 years old sucks too cause I can't see at night loss if side vision 😔😔
Hi Cayla! I also have RP. I am symptomatic very similar to you, in that I have the patchy vision, and nightblindness. However, I am still very high functioning. I drove for a few years but it was very limited and I gave it up because I wasn't confident in my vision. I can't walk around at night or dim restaurants, and I haven't ever seen stars. The patchy vision hasn't been a big issue, I just trip sometimes and can't do many sports. But I can see color and have very good central vision.
You're the first person I have come across with the condition who I could talk to, and I'm wondering if you have some type of social media where you talk with your subscribers.
Zach Vancas I usually respond to comments on here, and I also have a Twitter @its_CaylawithaC
Zach Vancas
There’s nothing scarier than losing your Vision and I think of that as something I could learn to live with.
😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍
Everyone who is cited thinks it’s ok to discriminate Visually Impaired people and it’s unacceptable.
I I have friends with RP and they have told me how it affects their vision. Like my friends Sarah and Stephanie say that their site will get worse but they're not going to lose all of their vision. I really applaud my friends for using they're Kane and learning Braille to help them live the life they want.
That’s really great that you encourage and support your friends for learning braille and using their cane ❤️
Thanks for this video.. I was born with rp
Very good Billy okay that you should keep up the good work and remember you're not the only one that has RP Molly Burke she has RP is well so you're not alone in that account
Even though I wasent diagnosed until my middle age. I used to joke when o was a teenager that I would get lost coming home at night. I would and still do constantly spill something at the dinner table my dad would get so angry but no one thought to get me checked.
Ugh I hated so much when my parents would get mad at me for spilling something. Totally unfair
@@CaylawithaC we never knew there was anything wrong. My parents just thought I was careless
I’m glad you have this outlet it really helps people to understand and it is good for you to get understanding and other ideas. Thanks for your venue 👍👩🦯🙏
1. RP can be inherited by autosomal dominant, recessive or X-linked.
2. Retinitis pigmentosa mainly affects the retinal pigmented epithelium, and their job is to support the photoreceptors. Hence why the photoreceptors die.
3. You have no depth perception because your eyes aren’t working together (the right eye is worse than the left).
Thank you. That’s a lot more technical than I felt qualified to say lol. And I heard that a few weeks ago about depth perception and thought it was really interesting
Marlene is RP CURED.???
Is there nywy to slow down the loss of eyesight?
I have rp I've had it since I was nine is there any treatment I've lost a bit of vision lol but it's nice to watch these kind of videos from new Zealand
Hi Blair! There’s not any treatment at this time. I think they are working on some different things but they are only trials at this point
Hey Cayla/ I''m colina from Indonesia. I have RP and I'm 25 now. This 2 weeks My sight is foggy and I it is harder see at noon under the sun light
Hello! Nice to meet you. As my RP has progressed it has also gotten harder for me to see in the sunlight
@@CaylawithaC how about foggy vision? Do you see the fog on your vision?
Good video. Answered my curiosity about it considering just how many VI youtubers there are with it.
Your retinas are defective. Mine (RoP) fell out of place.
Blind Ryan yes Sturla applying RUclipsrs with this condition and one famous flying RUclipsr that has it is Molly Burke
I watched a few of Molly's videos. Not my style personally but she does good work. I'm one of the rare people whose life didn't work out like it was supposed to. All the years of being promised the world and nobody thought to look at my other, more invisible health problems. Instead of a career, I'm not allowed to work. Instead of college, I did a year in stir.
I'd love to do an interview with Cayla or someone like her comparing and contrasting our lives. I think it would offer a lot of people a new perspective on how the world works (and how we have to work within it.)
Everyone is so brave!!!!!!!
My family would cry 😭 if I lost my vision completely and I couldn’t see anything else ever again.
There is treatment for RP in Ayurveda. There is an expert eye doctor Dr. Anupama J Dilip ( BAMS, MS) who treats RP and other complicated eye diseases very effectively at district government Ayurveda hospital at Asraamam, kollam ( district) , Kerala ( state) , INDIA .
I have to like u r talking about and I wondering if there is anything else besides a cane for me to use
I’m not sure. I guess the other option would be a guide dog, but I believe most guide dog organizations require you to be proficient with a cane first
Have you heard of Molly Burke? She has RP too You should check her out
Emma Harper yes! She has been a huge inspiration for me
I heard I have been wiley burned since I was Two years old And before the I had perfect vision, but when I want the duckers a couple year later they're We're trying to figure out why I was legally Blind, and what did you up with? Is that?
I was 2400 vision in my better eye. End you decided I was late considered Legally blind
Hey Kayla I’m have RP and I bet had it ever since I was a kid and you Artie first person that has RP that talks about it on RUclips and I would like to chat with you about it some more
You should check out my favorite blind charity Lions camp
Hi im alice im also have RP
My father is suffering from RP .. i m very much in worry about him.. there is no treatment in india for rp.. Plzz Anyone help me. He did not evn saw me till now. I want to be him well..😭😭 plz help me 😭😭
Unfortunately there is no cure. The best you can do is accept it and learn to adapt to a different way of doing things and try to still enjoy your life
You said in your video that you cannot see in the dark.
Do you wish you could see in the dark?
Did you know that molly Burke has Rp is well?
I can see in the dark very well.
I do not like the day like because I cannot see in the day.
@Venomous I have it in a way my friend so my I condition is caused by Barbados syndrome or scarlet moon Barbados syndrome and I got it because of my parents terrible care what I’m trying to say is they were both carriers for the disease and because of it I have autism Asperger’s syndrome I have for enough for free and it’s under the heading RP and just that is how my IT condition began because I never have optic nerves in the back of my eyes my eyes are deteriorating to the point where I lose my ambition
Is lasik not preferrable for those who suffer from RP?
mayur surwase no, lasik is not a treatment for RP
Hey my question was if I have RP and a spectacles too...so I can go for lasik to just remove my spects...as I think there is no relationship between these two right?
mayur surwase oh, that I don’t know. That would need to be a question for your eye doctor
You are not doctor but I think patients have more knowledge about their disease rather than doctors.I don't have RP but nystagmus which made me legally blind.I found many doctors ignorant about nystagmus so I had to explain them about my condition.I'm the only one in my family with sight impairement but I'm quite worried whether my condition could pass to ky kids.
Sajju Gurung I agree that sometimes it seems like doctors don’t know very much about it
We've heard the treatment will be available after 2022. Do you know anything about this?
sizantahmid I know they have been working on a treatment for a long time, and a lot of things seem promising but I don’t think there’s any guarantee. My eye doctors have been telling me for the past 20 years that there should be a cure in the next five years, and there’s still not one.
Cayla with a C this is the real fact. 😊
@@sizantahmid no need to wait till 2022. Its alreadwmw been found😀😀
@@gokulkrishna1109 Found!!😱😱Where? 😱😱😱 any link?
@@sizantahmid in Canada plz contact me will share u details +917022543949.
DAMMM,,,,, EXACTLY WHAT I 'D EXPERIENCED?
Mr LDO i’m glad you can relate
I was just being diagnosed with RP just 2 weeks ago by eye specialist after running a bunch of tests . My while world kept crumbling down as I still in denial. It was extremely difficult to know that i am going to lose my vision. As none of my family members has RP, I am the only one with the disease. I am 56 yo. I no longer keep in touch in my siblings as we have our own lives. I am extremely scared to death as u still has no way to deal with it . I live alone and unfortunately don't have friends around and that it even make me more scared. I just don't know how to deal with it
I’m so sorry you are having a hard time. I know this can be very scary and difficult. It just takes time to become ok with it. I hope you can find some sort of comfort in these videos ❤️
Hey how are you and your vision ?
🏳️🌈🙏🏳️🌈
Just got diagnosed today.
My sister was diagnosed 10+ years ago, and is now only able to see a small amount.
I guess, the only thing I can think about is that, I am now more limited on how long I'll be able to create art... And how much I don't want to lose the ability to look at my wife...
Hi. I’m so sorry to hear that. I know getting diagnosed can be very sad and scary. Try to cherish what you do have for as long as you have it, and know that everything will be OK in the end. And it’s OK to take time to grieve ❤️
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