Is There A Cure For Retinitis Pigmentosa, And Do I Want One?
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- Опубликовано: 28 авг 2024
- A lot of people wonder if there is a cure for my eye disease (Retinitis Pigmentosa), so I wanted to answer that question. I also wanted to share my thoughts on whether or not I would want a cure.
A lot of respect how you conduct yourself and at ease with things. For me if I’m can’t find a cure then being at peace with it is something I’m still battling with.
P.s. your beautiful
God bless you sweetie. You show a lot of Courage. I too have RP and I am 51 years old. I lost my ability to drive over 12 years ago and am currently on disability. It absolutely does suck. Thankfully my wife has a good job and is able to take care of most of the bills as well as help me get around. I am however praying and hopeful that they will come up with a cure, possibly stem cells, so that I could regain enough vision to be able to go back to work so my wife doesn't have to work so hard. Keep the faith as I will be praying for you and the rest of us out there that are suffering from RP.
Thank you so much for your kind words! ❤️
Wow this video opened up my eyes a little! No pun intended haha. I have retinitis Pigmentosa as well and I am an artist, I do very detailed work and I definitely in my eyes you do what I do, so I hope there is a cure soon, but in the end I will just put myself in God's hands.
Hey! I also have to. And do what I can i.e. train jiujitsu, and am studying to be a nurse.. so am definitely better off than some. It's nice to know that we're not alone. No one can do anything, but everyone can do a lot!
I have rp to I'm just glad I'm not alone do as much as you can before you lose your vision
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Wait till about 10 years from now when you lose your center vision at least you can still read the eyechart I have been listening to this for 15 years about stem cell therapy research millions upon millions of dollars being sent in and the bottom line is nothing has been done of course they use words like oh possibility it might work give me a break you are not so desperate that you were going that’s because you still have vision and can read the chart but you will soon learn in the future that not everybody has that ability and again as I said for 15 years I’ve been hearing the same word now we can have a vaccine in nine months and we worry about the coronavirus that nobody can see we can even turn a man into a woman but yet moreBut again 15 years later absolutely zero result saw Dr. Lam at Bascom Palmer eye and there is absolutely nothing and I mean nothing that can be done so don’t listen to these videos and get any types of hope on because all it is is another business where is all these billions of dollars that are donated going to have you ever noticed anybody on TV how well they are dressed give me a break
that just different option my 2 bros got it done and there fine they can see lot better know so everyone go to mass eye and ear in massachusetts rpe65 is the cure
I agree with you. I have RP too but I have learned to live with it the best I can. I have been able to travel the world alone. Some days I have trouble walking down stairs or can't find things when I drop them..or bump into people when waking at night..annoying little things like that happen but I've managed to choose happiness everyday and to feel happy about what I can still see. Thank you for your video. Take care.❤️❤️❤️🙏🙏
That’s a great attitude to have! And that’s quite an accomplishment to have traveled the world by yourself. Traveling alone is one thing I haven’t attempted and I’m not sure that I would. But that’s very impressive that you have
wish you well
I have RP to
Very smart and true Kayla.
Live your best life, Cayla. My son's best friend in an Occuloplastic surgeon. I've put the bug in his ear about Retinitis Pigmentosa several times. He's on the lookout for the latest procedures for this. I hope and pray one day soon there will be a cure, but in the meantime keep taking advantage of every joy. I love your positivity!!
Carla Sanders thank you so much!
This video has really helped me Cayla, I found out recently that my little girl has an early macular dystrophy, too early to tell at this stage exactly what it is and as a parent it scared the hell out of me, I couldn’t do anything but cry and imagine the worst initially but finding people living with this talking openly it’s brought me back down to earth and helped me to understand and make peace with the road ahead. Thank you for that it’s giving me and me wife hope that my little girl can still have a great happy life despite these obstacles in her path.
I’m so glad to hear that. I wish your daughter and your family all the best
Hi Cayla, I too have RP. I am 55 years old. i am still working but only part time. I pray that one day there is a cure.Thank you for your video and insight.
Hi Barbara! Thank you for watching and for your comment ❤️
i would be so depressed if i was fully blind. i’m minus 5 in each eye. my worse fear is a retinal detachment. literally worse than death for me of that happened. i do not want to do the face day recovery for two weeks ! f ing insane.
I’m sorry you feel that way. I have no functional vision anymore and even though the adjustment is hard life is still worth living
RP isn’t fun. That’s for sure. Found out I had it about 14 years ago. Yea maybe one day there will be something for us, pretty girl.
Im from India.
Many ayurvedic hospital there
Stem cell treatment also there.
Pls search in RUclips
Type this -Rp treatment in india
Love this video. You Break down the risks and rewards very well, and I love that you’re not afraid to admit what you want. Also, preach girl! You are not broken! PS, I’d love to do a collaboration video when day.
Annie B Videos thank you! I would love to do a collab!
Annie B Videos I would like to do a video with you one day
Hi my name is Sergio I have RPI so just want to comment on your video really like your attitude I think the same way keep it up and let's live this life to the fullest like we were intended to do despite our disability
I really enjoy your videos. I also have RP. Thank you!
Blind to Billionaire thank you so much! And welcome to the channel :)
Hi Cayla, thank you so much for sharing your video with us.
I have two son's Mason & Steven with RP. Both have considerable sight loss now, but they are the most awesome guys. Acceptance and hope is what keeps it all together for them. Never give away the hope.
Having said that - Steven is cramming heaps of positive outdoors activities - coordinating the Blind Foundation events, meeting many inspirational people.
Whilst in Nepal last year I met a Eye Specialist at the Yak & Yeti Hotel who was attending the World International Optical Conference along with all the top eye specialist/surgeons/doctors from around the globe. Our conversation was on RP - he confirmed exactly what you are saying.
RP is always at the top of these conference discussion lists. Sadly they have not had any breakthroughs to date.
The one thing we missed being informed about was the progressive deterioration to blindness. We were not told this was the likely outcome when my son's were diagnosed as young lads. We were not advised of tools of learning brail. Very little help or advice at all. However I will emphasis here that these son's of mine have and incredible will of independence. Steven in particular , whilst Mason is 24 hour care/wheelchair mobility due to a head injury in a car accident 25 years ago. Mason's sight has had a rapid deterioration in the last two years, so his cares are stepped up to keep him safe.
I thank you for sharing your comments/video - well done. I wish you well.
Nga mihi
Trina
Trina Mitchell thank you for your comment. Your sons sound like awesome guys, and I hope my videos can help you all. My parents and I were also not informed about the progressive nature of RP when I was diagnosed as a young child. My deterioration in early adulthood came as quite a surprise to me.
Very coragious. Thanks
Thank you ❤️
Hi Cayla, I really enjoyed your video on this topic. I agree with how you phrased it-that a cure isn’t perfect, it’s a possibility. Going blind is really scary but there are adaptations and non visual skills we can learn to navigate life independently. There was a book (can’t remember the title of it) where a man who was blind all his life became sighted and instead of the Hollywood “this is amazing!” reaction, he struggled to adapt to living in the world as a sighted person when all his life he had used non visual techniques like listening to traffic instead of looking for it just like people who are losing their vision have to learn to live non visually. I think that’s one huge misconception that a lot of sighted people have-that living life independently and happily can only happen if people are sighted like them. Instead, there are different ways of navigating the world and different perspectives. 😁 Thank you for sharing your experiences and opinions on these important topics. Hopefully more people will become more aware.
Please share the name of the book. I'd love to read.
That's one thing I gotta,deal w being handicapped people treat me lie I'm broken
I had a cousin who got the stem cell done and he can drive now. He also got a crystal in his eye. We all have RP and we’re very hopeful this will be done more. Also I feel you about the medical procedures LOL I don’t even like getting a flu shot 😂
Oh wow that’s really interesting. And yes I don’t like getting shots either
Well said Cayla I also have rp. I'm noe 37 and I still have some usefull vision but really terrible losing your independence and quality of life. I've been following stem cell and gene therapy for many years in frustration . In the past few years there has been some very promising therapys on the horizon. Two i recommend for rp patients to follow are made by opsis therapeutics and conesight therapeutics . In simple dorm whar we need back is zone and rod photo receptors . I would deff try one of these trials.
I’m 37 and had it since i was 5, haven’t been able to drive for 10 years. Last thing i had one to my eyes was cataract surgery in both eyes, and helped far as far off reading, and i can read close reading with bifocals on my glasses. But it has changed things far as getting around, i dont know if the new lenses in my eyes make everything to close or what, i just know I didn’t have muchof a problem getting around on my own before.
Your channel touched my heart.
Aw that’s so nice!
I'm 20 years old and I have RP. I've lost my night vision and I'm losing my peripheral. It used to not bother me but the idea of going blind and have to rely on other people to do anything scares the hell out of me. I'm glad you have a better outlook than I have.
Michael Gregory it can definitely be scary. I do rely on people for some things, but for the most part I can do things on my own. You just have to learn how to do them in a different way
Thank you I have been trying to tell family members that I want to keep what I have
What a great outlook!!
I feel the same i just keep,the vision that's left NO trials
I hope to God one day they do find a cure. I'm 29 years old and I work in construction I have a family that depends on me. What sucks is when you pass it one to your children and knowing what they will go through. The only thing is prepare ourselves for the inevitable but hope and pray to God for a cure if not for us but at least for our children
I think it’s too much of a roll of the dice for me to go through a procedure. Like you said though if there’s a high chance of success I might consider it.
JC5 Productions well spoken my friend
So true. While I am supportive of people who work on understanding the eyes more and going blind is scary, I’m also terrified of losing the vision that I currently have. So I always take some time before learning about a possible cure because that’s what it it’s a “possibility.” And I’ve learned a lot of adaptions that have made my life less stressful and happier.
Well said I too support you I suffer with
RP as well I was born with it. That Surgery is not 100% not even 50/50 live your life there is a better future ahead Unfortunately in this world / System this is the Hand we are dealt with Thank you 😎
I totally agree!
I agree about the treatments bit- I wouldn’t put my self for a clinical trial either! Your videos are really good quality, I’m guessing you use Final Cut Pro? And what camera do you use? I’m going to watch the rest of your videos when I have some time tommorow- keep it up Cayla! :)
Naz thank you so much! I actually just record on my iPhone and use iMovie to edit
Me myself have epilepsy and I have a lot of the same thoughts like you. I am not perfect and there is no final cure epilepsy either. Even though I take a lot of medicines I can still get big seizures(although it happens more rarely), but I don't feel that I am broken or that my life is bad. If there comes a safe cure fore epilepsy then I would be seriously think about getting it.
Øyvind Svanevik i’m glad you can relate. Thanks so much for watching and for your comment
Maybe you're seeing the wrong type of doctor. My favorite doctor is Dr. John Bergman because his videos kept me off of pharm drugs.
If you're looking for a safe treatment those medicines aren't it. I looked up epilepsy in the book "Prescription for Nutritional Healing" by Phyllis A. Balch, CNC
There is a lot of information and a lot of things it suggests you can take, for example L'carnitine, L-tyrosine, magnesium, omega 3s, selenium, B complex plus extra B3, B6 and B12. folic acid, B5
Those are considered the essential nutrients, then there is a list of very important and another "helpful" list.
So here's your chance for safe treatment, Check this book on Amazon, gets great ratings, and has sold over 8 million copies.
Angie M I do also take some different vitamins like B-complex.
Øyvind Svanevik yeah man you are not broken.
It is what it is
Øyvind Svanevik I have epilepsy and I feel the same way that I am not really looking for a cure. I am now advocating by making youtube videos about my epilepsy
I agree with your logic and feel the same way about my RoP. I'm sick of disabled people thinking their disabilities are their identities (you see a TON of that in ACB and NFB sponsored classes and get-togethers.) If there were a cure, a 100% safe cure, I'd goddamn take it in a heartbeat. It'd be scary. I'd lose my disability safety net. I'd still have my asthma and fibro and partial deafness to contend with. I'd still take it. I want to be a real person. I want to drive. I want to work a real job. I need a way to USE all of this ambition and determination beyond playing video games on twitch and e-begging.
So fuck those "identity" people. If I had to summarize my "identity" it would be thus: "Highly ambitious, blunt to the point of abrasive, and humor dark enough to melt the sun." NOTHING to do with my disabilities. EVERYTHING to do with my psychology.
And, god damn it all, you got me to write another book. WHY ARE YOU SO THOUGHT-PROVOKING??? You're making me want to do videos like this! How do you organize your thoughts? I'm a big "um" and "uh" guy because the fibro makes my brain fart in the middle of a thought. *eyeroll* life, eh?
I have RP myself! Blessings to you Cayla feel free to reach out
Austin Eldred Nice to meet you. Thanks for watching and for your comment
There will.be a cure !
I am also suffering from RP
So Brave
I have RP and I have a feeling there will be no cure, there will be little checkups u have to do so it improves ur vision a little but you have to come back and spend more money for your vision.
Prince ea said it best, a disease cured is a customer lost.
I just found out. Something about cannabis. Has ingredients that can help with RP. I know since I also have this condition.
I’m trying to participate in either a gene or stem cell therapy that involves one shot in my worse eye. I’m perfectly okay with that. But not actual surgery.
The risk of those types of things making your vision worse is sooo small. For almost everyone, the worst thing that will happen is that it simply does nothing.
You are braver than me lol. A shot in the eye sounds terrifying. And I think the risk of vision loss is different for each type of procedure. A person should definitely do their research about the procedure they are considering so they can be fully aware of the risk
I don’t think it’s braver than going blind and not trying to do anything about it. They tend to do it only in the worse eye, which for me is my left eye. My right eye has tons of functional vision, but my left eye has lost a lot of peripheral AND central vision.
Well said, Cayla. It sounds like you have this all in perspective.
BTW, I love the little anchors on your blouse. Stay strong, as I know you will.
Cayla you are amazing. You will go far in life, because of your positive outlook and acceptance of what is, since that's all there is. If everyone realized that the world would be a very different place.
I happen to have been looking for information to help a lady that is looking for natural and safe ways of helping with the same condition you have. So far she has come up with the information below, from another member of the same amazing FB group.
If you want to look into any of for your own information you might find it interesting. Of course I'm not prescribing anything either. It's just good to keep informed, of all the information out there.
www.naturaleyecare.com/study.asp?s_num=446
The link above is about acupuncture for retina health and possibly repair. Something for you to research.
Also:
15000 IU (equivalent to 4.5 mg) of vitamin A palmitate, omega-3 fatty acid, DHA, vitamins E, C and alpha lipoic acid lutein, zeaxanthin and bilberry.
CoEnzyme Z10
Homeopathic remedy: Bothrops Lanceolatus 30x or 30c daily three times a day under the tongue for 1 month. Follow standard homeopathic protocol such as no strong smells, no coffee, no minty mouth, etc.
I have seen methods such as palming used to improve eyesight, and was just watching a video that you might find interesting:
ruclips.net/video/EzsckWSQkss/видео.html
And even if you've already been down these avenues maybe someone else that could use this information will see it.
Angie M thank you for your kind words and thank you for the information
My dad has this too :(
Anoop N I know it can be hard, but there’s always a silver lining
Cayla with a C I'll pray for you and everyone :)
RP sucks, I'd love to be as positive as you are Cayla, but I can't imagine getting to the point of being blind, in the last few years my RP got worst considerably and it really sucks, specially for a 23 years old athleat like me, honestly I rather die before going completely blind.
eustace walwyn I know it sucks. But just because you’re not positive about it right now doesn’t mean that you won’t be in the future. It just takes some time
I have rp too
Mr. Saffold same it fucking sucks balls im in school and im like god dammit i cant see it and im in the front row its like turn the lights back on ps im only 14
I love your channel will you be my RUclips friend can you see without your glasses can you show all of your glasses
Travis Jones thank you. My vision with and without glasses isn’t very different. Things just look a little bit clearer when I’m wearing them. I do plan on making a video about my glasses, I’m just not sure when I will get around to it
You are very little now and i am dure you have pretty much of vision left. Come with this same attitude 1 or 2 decades later