Retinitis Pigmentosa| Am I going to go blind?
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- Опубликовано: 13 сен 2024
- I’m sharing this video as I embark on a new journey. Finding out I have an incurable eye disease which can lead to total blindness I’ve decided to take you on my journey. This is the beginning of finding out I have Retinitis Pigmentosa.
You are so brave Jordan. I'm 57 and was diagnosed with RP when I was 19. It's hard, very hard at times. I have no answers for you. But you will surprise yourself with how strong you are. I've just started to use a cane in certain situations. We can still be independent I've had the hardest time with asking for help but you are right, people that love you, will help you. You got this.
Wow thank you so much! It’s all a beautiful journey!! 🙏🏼🙏🏼
Your story sounds almost exactly like you daughters. Diagnosed at 16.
The only thing is...many, many people NEVER go blind. EVER. I've been researching and connecting with others who have it and many have stabilized. Please research supplements, acupuncture and change in diet. Last...SO much research and development is happening now. Don't EVER lose hope! Progress is happening and you are young enough to be able to benefit from all that is in the works. Do your best to stay positive. Big hugs to you...
Thanks for watching! I am just processing everything in my own way and in my own time. I done research is supplements and diets. I went to a special acupuncturist who specializes in RP. It's all a journey!
May i ask what kind of diet can have benefits?
Yes! I went raw vegan and began many different therapies to eliminate inflammation have seen much improvements.
Just wanted to say that i have the same disease and your right it is hard to go through it, i knew i have this disease in 2023 a year ago and my vision is weaker now but its not in our hands
Lets pray abd hope that soon scientists find a cure
There are answers out there!! I do believe you just have to take your life into your own hands. I’ve found some pretty powerful answers on my journey. This is been a beautiful beginning for me. I hope the same for you.
We’re so proud of your bravery in sharing where you are right now, and even more proud of the strength it will take to move into the coming chapters 🙏🏼
We’re always here 🧡
thank you!!
Aloha ma’am, I have the same thing. I didn’t know until March of 2020. I am not into social media but follow RP groups on Facebook and came across your video and just knew I had to reach out and say thank you. You are an inspiration to myself and others with the same genetic issues for putting yourself out there. I am still lost in my acceptance of this but will continue to move forward.
Thank you so much for the kind words. It's all a journey for all of us!
Hey what island you from
FBI but live gathering isle. You?
@wandering_Heretic66 where's that?
I thought maybe you were from Hawaii cause you wrote Aloha on previous text above.
@@808_babyj I am. Oahu
I’m so sorry to hear what you are going through. Thank you for being brave and sharing your story. You’re right about people not knowing what someone is going through. People can be quick to judge. I pray that you have a beautiful happy fulfilled life.
Thank you so much for watching and supporting!
God bless you for going through all this and at such a young age. You’re inspiring me to start my own YT about my own journey with glaucoma. TY and Im going to keep following you. Much love
Thank you for watching. It’s been a beautiful journey!
My girlfriend has this.. I worry for her. And it really sucks. But I have hope in our scientists. I believe they will find a way to help my girl, and you aswell. Stay strong 👊🏻
We are our own healers and have the capability to heal our selves. 🙏🏼🙏🏼
Japp, I have the same stuff, I work in a health sphere and do practice a lot of traditional and untraditional things, what really works, so if you want I can give you my WhatsApp and shear it with you!!!
Hey Jordan, I'm 23 and under 10 field of view both eyes. Thanks heaps for this video. You literally explained things that I cant properly put into the words to explain to my friends and family .. to I guess make sense of the struggle. The overcompensating, the immense anxiety going to new places with friends is horrible. Sending my love and support and for anyone else going through the same thing, you are not alone and we got this.
I’m so glad you found my video helpful!! Sending you peace through your journey.
Im 28 and I also hace RP. I understand the way you feel. Everything is going to be ok. Thanks for doing this videos. We are not alone ✨
Thank you so much for watching. Sending you love.
Please stay strong and positive. Hopefully they find a cure for RP before you lose too much more sight.
I was diagnosed with RP at age 30. Back then I had 20 degrees of vision in each eye. 30 years later I still have 10 degrees of vision in each eye. I’m now classed as legally blind but I still manage to get around quite well in familiar places but rely on my white cane un unfamiliar and crowded places.
Thank you for sharing your story and thank you for the positive words!
Almost the same progress with my mom. Shes 65 now and can adapt and live normally
Thank you for sharing your story. My father has RP and growing up I watched as he slowly lost vison. I never knew how it affected him mentally, but hearing your story it have me a glimpse and I appreciate your willingness to share your journey.
Thank you so much for watching 🤍🤍
I totally understand you literally spoke my heart completely we will get through it. Thanks for your bravery.
🙏🏼🤍 yes this is all a crazy crazy journey.
Jordan.... you are an inspiration and your candor and transparency about your experience, will be an amazing legacy for all that have the opportunity to watch you. Stay positive. You are doing all of the right things!
Thank you sooo much for your words!! I hope you and your family are well. 🤍🤍
Keep your head up. I suffered from a 6 cm brain tumor and have some vision loss. I do not know what my medical diagnosis is yet but in a month or two I’ll find out. So you’re not alone, it’s just something we have to get used to.
Thank you for sharing a piece of your journey! This video I was just embarking on a total life transformation. This journey has been beautiful!
Just want to wish you all the best on this incredibly hard journey ahead. I have some idea what your going through as my dad went blind in his late 50's in a matter of about 2 years. I know things will be challenging ahead but as Monty Python said 🎶"Always Look on the bright side of life" 🎶 take care and thanks for sharing
Thanks so much for watching and support my journey!
Your feelings are valid. I hope it gets easier to accept and cute dog BTW! You can write a book about your journey, record your thoughts. You will just evolve into a NEW YOU.
Absolutely!!! You just are seeing the first parts of my journey a year ago. My entire outlook has now changed and so many opportunities have opened up!
i am so sorry for your suffering i wish all blessings will be bestowed on you
I am free from suffering. I have peace and love. 🤍🙏🏼
@@Jordanxrise you are very strong and brave wish you all the best and keep inspiring
Jordan! Thank you so much for this video! I am relating to everything you have talked about! I recently decided to give up my job in HR and I am super scared for this next chapter in my life and the fact that I am just 32!
Sending you a hug. I’m 32 as well! This video was posted two years ago maybe? I’m not sure. But i will say my journey has been so beautiful and it was the best thing that I could’ve hoped for. Life has a funny way of letting us see the bigger picture when we are ready to see it.
Sorry to hear about what you're going through.
I also have RP.
The best thing you can do is to take care of yourself first.
And when you're ready get a hold of the national federation of the blind.
They have so many great program that can help you.
I'll be praying for you take care.
Thank you for your kind words. 🤍🤍
I can understand what you are feeling cause i have tha same problem as you but i haven't spoken to anyone who has the same problem like me. My life has changed. I wish that one day they find cure for me and all the people who suffer from this condition 🙏
Yes, that’s why I’m taking my health into my own hands these days!
hello, my son has the same problem, he is 8 years old, I try to calm down and pray that maybe a cure will come, be strong❤
I can understand this. 🤍🤍🤍
??what?
This is my life. Well said lady. RP is impossible and finding some “happy” is impossible and some disabilities aren’t visible. To the outside world everything looks fine. Just keep smiling on the outside, barely holding it together inside. I hate this for you. Lol, I hate this for me. I did get to have a drivers license for a while and that was neat. Big shift though. Now I can’t even go for a hike in my woods. I keep telling myself that im going to learn the piano. My hearing is exceptional now.
Thank you for your message. This video was from some time ago. My entire mindset has shifted in realizing this diagnosis was the best thing that could’ve ever happened for me. I’m happier now then I have ever been or wouldve have been. My experience has forced me to create the life I love and get completely out of my comfort zone and start living for me! I am sending you my grace and compassion as you navigate this amazingly beautiful human experience we are having.
"usher syndrome" here...trust me, its been 4 years now where everything is declining
i will never compete with it, everything is just a big pile of sh*t -.-, why do we have to go such a suffering... i would do everything to become "normal" again...
good luck for your journey!
Thank you for the comment and for watching my content. 🙏🏼
I’m late to this video. I was diagnosed at 21 years old with RP. I’m 50 now. Just lost my lisence. I’m struggling as well.
Sending you guys. I gave up driving almost over a year ago. I actually love the freedom I have from the anxiety of it.
Hey Jordan. I also have RP and have been through exactly what you’ve been going through. I would recommend getting into vitamins and nutrition. Check into Astaxanthin, Lutein, Zeaxanthin, NAC, and Saffron Extract. Check with your doctors on these for best dosages for you. There is hope to retain what you have and to slow the progression, and even to regain some of your vision back. Take some time to research these supplements. Keep your head up. ❤
It’s all apart of the journey. Thank you for sharing. 🤍
Does it really help?
Whats your vision rn?
Am at 6/36 will it work?
I'm also just 22 and I have also diagnosed as RP. I can totally understand you that what's going on in your mind and with you. I also very depress about it. I have many dreams but I really don't know that is will be come true or not.
All of your wildest dreams will come true. Even if you don’t realize them now. Just continue on your journey. 🙏🏼🤍
Howe are you now
Be strong you'll be able to pull through this just another obstacle on the way don't ever feel down God bless your heart
It’s all apart of this beautiful journey. 🙏🏼🤍
Hi Jordan, thanks for sharing. Our son has a progressive blindness disease similar to retinitis pigmentosa but it is called choroideremia. Have you heard of that? My grandpa also had it and was blind since I have known him. RP and CHM are very similar with loss of night vision first. I being a carrier have side effects but right now it's just night vision impairment. I am so sorry you are dealing with this. It is very scary. We pray for researchers and scientists everyday for a cure for all these diseases. We are getting there little by little. Do you have a good support group with the RP foundation? Growing up I always participated in Vision Walks with my family but now having a son with a blindness disease makes it seem so much more real to me and what a difference those walks and the community of people together make. That has helped me cope with the news of my son. Praying for you and thank you for sharing. You are not alone and I am thinking of you.
Thank you so very much for your message. This experience has been the best thing that has happened to me. It truly allowed me to find happiness and get out of the normal hustle everyone else is in. I hope you continue to watch my channel.
@@Jordanxrise I hope and pray that's what my son will feel as well. Thank you. I will definitely keep following your videos. Thank you. If there are any vitamins or tips that you have learned to help slow the progression, we would appreciate that as well. Along with just the coming to terms and living life because vision isn't everything. My grandpa was such a good role model for that for us.
Your son will find his way. I have been on a detoxing and healing journey for almost a year which has dramatically helped my vision and mental health. I will be posting more on this journey. If you look to some of my more recent videos I have discussed this briefly but I will be sharing more very soon! @@emilyhaus9689
Hi I’m so sorry about your RP I was diagnostic four years ago, I’m still driving no a lot
Thank you. It's actually been the best thing that has ever happened to me. It opened my eyes to a whole other perspective on life. I hope you nothing but peace and healing in your journey!
✌️♥️ I just saw your video.. My husband has it.
🙏🏼🙏🏼✨✨✨🙌🏼🙌🏼
I am 44 and have Retinitis Pigmentosa was diagnosed at a young age aswell as5 of mysiblings and all 3 of my children have been diagnosed RP...living life away at a time
Sending you a hug on you and your families journey. 🙏🏼🙏🏼
Don't be sad everything can be happen in the life. Just should be powerful
I’m trusting.
Hi
Hope you're probably found a treatment of this or must have participated in any of the clinical trials that are going on...I have the same disease and you spoke my heart out....please get back to me if you have any good news.. may you get well soon♥️
Hi! I’ve actually been following a strict new lifestyle and my vision has seemed to improved a lot. I believe I’m on track to heal my body and I’m on the road to optimal health. 🫶🏼
Hi, we are in the same situation. I was diagnosed at 18. (4 years ago) I've been going though a lot in these 4 years, and now I think I've arrived a place where I have no way to go. Now Ive gratuated from college, and i need to get myself a job, but I dont konw what sit me. Im exploring it.
(Im from China, and Im about to making a video about my life and my thought towards RP. btw, Im considering to make a English version of it.)
Keep on your journey. Be patient. Share your story!
Please stay strong. I am recently diagnosed with RP, I am nearly 30 years old. I heard that taking DHA, omega-3, vitamin a, b2, b12, E, zinc, may help
Keep watching my channel. You’ll see how my life unfolded!
i found out i have RP when i was 5 or 6, im now 22 and my vision isnt great but its not as bad as some of my family members (one is almost completely blind hes in his early 30s) my eyesight is 20/40. when i was 16 it was 20/25 it started deteriorating quicker these last few years but i have hope :). my mom, my brother, my grandma, my cousin and, myself all have RP.
Thank you so much for sharing your story. Keep on your journey. 🙏🏼🤍
I’m so surprised you were able to get a license, I am 26 years old and have similar vision to you and never got one
My vision must have been enough at the time.
I have the same disease. I came to know about it september last year. Till then i have been really upset as i saw some dreams breaking. I live in Pakistan and just going to graduate. I feel a lot of problems like when you go inside home from sun. You are just senseless what is going around. And night vision ooh it's bad really bad. As a boy who has to take responsibilities of the parents and family soon, It is hard. I just do not want to break their trust on me and i will find a way to deal with it. Taking some supplements and adapting a healthy lifestyle but yeah it is all about how you deal with it mentally. The biggeast challenge is the mental challenge. And also i dont know if i would be able to be with the love of my life with this disease. I really love her for 3 years but with this disease i dont know she will be with me or not and also if she agrees would i be able to be a man that gives her every happiness in life. Oooh its a lot to digest but fingers crossed and lets hope for the best. To everyone with any disease just put a smile on your face and say to that disease look i am defeating you.
Sending you so much love and grace as you navigate. You can have it all. Don’t fool yourself into thinking you can’t. You are divinely perfect and this can be healed through everything we have within us.
@@Jordanxrise ❤️❤️
I’m 41 and have RT.. my biggest issue is stairs!!! Girl your not alone and I pray there will be a cure soon for this disease!!
Yes stairs are fun!!! lol
Hi, sorry to hear. I have a similar condition. How is your eyesight these days?
Thank you for your comment. Isn’t it a beautiful challenge?
My vision all depends on my health at that moment.
God bless. Hopefully stem cell research picks up
I don’t think so would go that direction but thank you. 🙏🏼✨
@@Jordanxrise I actually think I’m going blind from eclipse. I was so dumb. I’m so scared. I’ve had 3 months of excruciating pain. My eyes are melting.
My daughter who is 8 years old have RP and it's has get the best of me I worry for her everyday I'm watching and I'm crying right now
I wish I could give you a big hug. I hope you watch the videos posted after this one because this journey has been the more beautiful journey for me.
I can hear your frustration i Beth there too when getting diagnosed. I don't really have peripheral and can't see colors and details so everything is completely blurred
If you wanna talk and lmk
I'm down
Stay safe God bless
Much love and Aloha from Hawaii
🫶🏼🫶🏼🫶🏼 this has been the best year I’m happier then I’ve ever been. Thank you. ✨
❤
🙏🏼🙏🏼🙏🏼🙏🏼
Hi Jordan. I came across your video while searching for more information about RP. I'm not sure whether you'd be interested in this. Some of my closed family members has the condition you've described in the video, and we went to Berlin to meet a doctor to get help. so far, the test results seem encouraging.
Thank you so much for sharing. Right now I’m more focused on healing through natural ways and I’ve been seeing great results by detoxing my body. 🙏🏼✨
Hi, would you mind sharing the name of the doctor and how you found them?
@@rahilfaridkhimani5550please check Dr. Anton Fedorov from Berlin.
Dr. Anton Fedorov.
Thank you for your video. Our RP fears and realities are all similar
It’s all apart of the journey. 🤍
Male 33 here from switzerland, diagnosed with RP about 4 years ago. My vision in the dark has drastically worsened since. I'm basically blind during night. On day light I notice that I have many blind spot and keep missing things. Not to mention it takes me ages to write comments like these due to typos. I can relate with many things that you say. I do not drive since about 3 years because I'm afraid I might hurt people. I keep reading of gen therapy treatments emerging. There's hope for us. Anyways thanks for sharing this. It helps to see that you're not alone and other people going through the same struggle.
One funny thing that keeps happening to me is that when i pure in water into my glas and after lifting the glas to drink I notice half the water being spilled outside of the glas lol.
Thank you so much for sharing your personal story. Yes, it’s a journey for us all!! Sending you healing energy your way.
I know what you r going through... my x husband has it on now my kids have it... my son is 30 just got approved for ssì he has 20% left in one eye and 15% left in the other eye. 🙏🏻🤗🥰
Thank you for sharing your story. 🙏🏼🤍 We all have special unique journeys.
I also want to thank u for sharing your story...I shared this with my sons gf so she can understand how my son is feeling... my son explains it but gets alittle frustrated trying to.. I am so glad I came across your channel.. ty again for sharing your story.🤗
@@Pittbullmomma67 Thank you so much for sharing my journey. I am happy to hear my journey could be helpful for your family.
Most people don’t go completely blind, actually. Most retain central vision.
My husband has this. His dad, his sister, his aunt. Even our neighbor across the street, lol
With my husband and his family, the vision loss slows and plateaus. You can go 20,or 30 years without any new progression. It’s very rare to lose vision completely. Please don’t worry about that.
@@sarahkaygamble Thanks for watching. This video is coming from my personal experience and my personal research. We all have different journeys. Thank you for sharing your families.
Thanks Sarah i m algérien and i have one child and je hais aprobleme of Répand im ill 👍🇩🇿🇩🇿🇩🇿🇩🇿💓🙋🏼♀️@@sarahkaygamble
Hey I also have the decease I’m 16 and my doctors said that if you have inheritated the gene from a person in your family and this person never went blind and had big issues then you will have a weaker gene. So I Hope that my great grandfather who had some problems with eyes, really had RP so I know that I have a mild process
I hope for the best for you. 🙏🏼🤍
How are you now ?
I m from india suffering from RP and facing difficulties in day to day life. Do u have any good news in accordance with rp right now
Hi!!!! Thank you for your message. I don’t have any news on RP. Just continuing to live each day with gratitude.
My kid is going through this. 😭
It's a journey for sure!
I just got diagnosed w this shit too😢
🙏🏼🙏🏼🙏🏼🙏🏼
Why are you still driving?
At the time my doctor told me i could still drive. I have since decided to go against my doctor and stop driving. 🙏🏼🤍
Hey I went through the same things with RP 💕🙏
It’s a journey!
The handicap situation i had someone leave me a letter to that i should b a shame smh
Yes!! A lot of People really don’t think outside themselves.
❤prayers 🙏
Ty 🙏🏼🙏🏼🙏🏼
why dont you start to work from home and who apartment locating or wholesale real estate?
Thanks for the suggestions. I have been processing a lot over the past 6 months. There are many options out there I am seeing now but wasn't seeing before.
💖🙏
Thank you!
what causes this?? God bless you
A genetic mutation. Thank you for the kinds words.
I have Retinitis Pigmentosa my eye I will going avoid further vision loss morning till night?
Thank you for sharing your journey. 🙏🏼🙏🏼🙏🏼
I would like to add that not true that most people go blind. Only severe rare cases does. Be positive live day by day collect memories and you wont go blind maybe legally blind but ull keep some of ur visio
Thank you for adding. I’ve been on several Facebook groups and many people end up blind enough to quit driving and have to use a cane or guide dog.
Personally any disease that alters your life in a way you can’t live like most of the popular is a big adjustment to accept mentally. Comments saying “you won’t” go blind is a bit insensitive to someone trying to cope with that are having to change careers and move cities because they can no longer drive.
I have the same case and i have been struggling since the age of 10 :). But i was trying to reassure you that you wont go blind. Legally blind is inevitable for us. But the way i see it, some people are born blind. We get to see have memories and cope and at the end we will have some vision left for basic needs and some independance. Try to let go the stress and learn to adap and be agile especially at each regression
@@Shadi-hs6gogood thanks 🇩🇿🇩🇿👍👍👏👏👏👏
So I'm not sure you know what you are talking about. Everyone that has this had gone mostly blind so you are wrong when you say "most people won't go blind". Also you saying well atleast they will have some vision left to still do thier basic needs and independents, you are wrong again. They lose so much vision that the small amount of vision that alot of them do have left doesn't help much to have independence and to do thier basic needs. Another thing you were saying is well "some people are born blind so be happy that you get to make memories before losing your vision". For one, people that are born blind never had thier vision takeing away from them after many years and they never had vision to know what's it's like so it's not a lost to them.. someone that had vision and then haveing it slowly ripped away from them has to be the scariest thing to happen to them. And you wanna say shit like that?? I don't think you know what it's like or you wouldn't be saying the dumb clueless shit you are saying..
Why I think you are single is that right?
Super insensitive comment by the way. I’ve been single since before anyone knew about this. I’m single because I haven’t found a person I want to share a life with and I don’t plan on just settling down just because everyone else is.
@@Jordanxrise Exactly right
The reason for asking this question was that usually people who think like this are people who have a pure soul
I am single too and not at all interested in being with anyone for sex or pleasure. I would like someone who understands and is full of love in a relationship.
I just wanted to know if there are still girls who think like me or not
I am not emotionless, I had a past that is still unfinished
I have had an autoimmune skin disease since I was 8 years old, and sometimes it is severe, sometimes calm, and then the problem is the lack of serotonin in the brain, which causes severe depression. I usually take pills, sometimes it is severe, sometimes it is low
And then, of course, it might be benign, but I don't trust the words of doctors for one reason
The lump in the lung they say is a benign inheritance, but maybe it is, maybe not, and then my mother, I was very comfortable, she was the only reason for my life, she died 3 months ago, my problems are similar, and it is not the same. I have a lump on my hand, they say it is benign, but I can really believe that it went away, but after two weeks it came back the same way, so maybe it's okay, maybe it's not, but I'm not sad because now my mom has gone somewhere else to God. But now I have a lot of mental problems, but even if I'm really going to die, I don't care too much because my mom is where I like to be with her. My purpose in saying these words is that one should try to hope until the last moment. Life is only a period of the soul. It evolves and returns to its original place, but it must be strong and full of energy. Everything may have a reason. My mother helped many people. Her own mother is my father's mother. She was 100 years old. We adopted orphaned children. Do we not? I know the reason for these things, God tests good people
Be strong, you are not alone. I don't usually hear these words anywhere, but I wanted you to know that I am not insensitive.
Wow, you have just told my story word for word, even down to the “it got worse in February” same! And I’ve been on sick leave from work because of this too, I’m so happy to find your channel, you’re very good at explaining it, where I find it difficult to explain 🫶🏼🫶🏼
Sending you healing energy. 🤍🤍
The religious end of year holidays & new years make perfect recipe for taking inventory. This will be fourth or fifth time I’ve gone blind in my life & only began experiencing definite symptoms near end of year. Specifically, walking into doorframes of my bedroom “repeatedly/over and over.”
Hey, I came across your video by searching "retinitis pigmentosa interview". I'm not sure if you'll see this comment but I also have RP (diagnosed at 3, I'm now 24) if you ever need someone to relate to please reach out to me, I'd be more than happy to chat with you if you want my contact info
Thank you so much for sharing your story. 🤍🙏🏼