Retinitis Pigmentosa Diagnosis, Symptoms, and Living with Low Vision before Blindness
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- Опубликовано: 11 окт 2024
- Retinitis Pigmentosa Diagnosis, Symptoms, and Living with Low Vision before Blindness
Matt describes his diagnosis, his early symptoms, and what it is like to live as a low vision person who is becoming totally blind due to Retinitis Pigmentosa.
Here is the link to the sunglasses I'm wearing in the video. They are great for someone with RP.
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#blindtobillionaire #blind #retinitispigmentosa
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Here are a few other videos about what it is like to have RP and how I use technology and adapt to my limited vision:
How Does a Blind Person with Retinitis Pigmentosa See and Identify People?
• How Does a Blind Perso...
Amazon Fire 7 Tablet for blind or visually impaired
• Amazon Fire 7 Tablet f...
Amazon Fire 7 Tablet Accessibility Tutorial for Blind and Visually Impaired
• Amazon Fire 7 Tablet A...
My husband has rp too. He has night blindness too. He is scared. Showed him this video. It makes him not feel so alone. Thank you for sharing.
Hi! Thank you so much for watching and commenting on this video. It is so nice to hear from you and meet you too. I’m glad you were able to show your husband this video and to give him some support so that he doesn’t feel so alone. I have over 200 other videos on this channel and I’m uploading multiple per week. I hope he is also able to watch some of my other videos and gain support through any of those videos along with my future videos. The whole point of this community is to provide support and camaraderie to anybody in the blind and visually impaired community along with friends and spouses of those people. I really hope he is able to reach out to us and to find value in all other videos that we produce. This is exactly why this channel exists. For people like you and him to give a supportive community and help you out in anyway we can. If he ever needs to talk or wants to reach out to me, please feel free to have him write some comments and I would love to get to know more about him. The same goes for you, if you have any questions or ever just want to reach out and talk with me, you’re absolutely welcome to do so. Thank you so much for watching this video and for the nice comment, I look forward to hearing from you again! Have a great day, talk to you soon, Matt
Nice Video! Forgive me for chiming in, I am interested in your initial thoughts. Have you thought about - Parlandealey Reducing Fat Process (erm, check it on google should be there)? It is a good one of a kind product for revealing the secret to eradicate your urticaria without the headache. Ive heard some great things about it and my work buddy after a lifetime of fighting got cool success with it.
Matt thank you for sharing your story. Although I'm your Aunt, I've never heard it told before. It's always been such a sensitive subject. I must tell you that I am in awe of your bravery and courage to tell your story. Hugs and best wishes as your journey continues! Love you!!
Hi Patti, Thank you for watching my videos and commenting. It’s nice to hear from you. It has been hard to talk about losing my vision because it’s been hard for me to accept. Thank you again for your support. Matt
Patti Oslund amen Patty Oslin! Matt has an awesome family.
Matt thank you for sharing your story about your Rp and what you had to go through the years
I'm glad I stumbled upon this. I've had RP since I was born. Was told by age 3 that it was official. My whole dad's side of the family has it so my parents knew it would happen. Mine is very slow growing which helps I bit I guess haha. I still have to wear contacts everyday cause glasses don't help with the peripherals at all. Once again, thanks for your video. You kick ass!
Hi! Thank you so much for watching this video and for reaching out to me. It is so nice to hear from you and meet you too! Welcome to the channel, I am very excited to have you here! That is cool that you also have RP, well, not exactly cool, but cool that both of us have it because were both pretty cool people :-) LOL :-) I am very happy to hear that yours is very slowly progressing, that is the best type of retinitis pigmentosa. It is interesting how your entire dad side of the family has it too. At least you have other people in your family that understand your visual situation. Thanks again for reaching out to me, I’m very excited to have you here! I look forward to talking again getting to know more about you :-) Matt
Excellent Video clip! Excuse me for the intrusion, I would appreciate your opinion. Have you thought about - Parlandealey Reducing Fat Process (just google it)? It is a good one of a kind guide for revealing the secret to eradicate your urticaria without the headache. Ive heard some super things about it and my old buddy Taylor finally got great success with it.
Hello Matt, thank God for this video. I had an RP too and is such a struggle to me but im doing my best to still keep going and still fighting. I pray so hard they will be a cure of our diagnoses.
Hi Faith, thank you for commenting and watching my video. I am so glad you found this video helpful. I hope we can help each other. I’m very confident there will be a cure in the relatively near future. Doctors and scientists are doing such great work right now and it’s only a matter of time. May I ask at what age you were diagnosed with RP. I was 15 and am currently 33. It was so nice to hear from you. I look forward to getting to know more about you. Thank you, Matt
Stargardt can be effectively treated and reversed by God's mercy nano-grade eye drops.
Successful human tests, not animal tests because there's no reliable animal test for
Stargardt and PR.
Next month, human tests of RP in China will have conclusion.
Western medication can't effectively treat Stargardt and/or RP forever because western
medication can't trigger Muller glia for regeneration of optic nerve and photoreceptors.
Please browse www.godforeye.com
All glory belongs to God !
God bless you !
Matt you are so brave and couragous and I am pleased to hear that your parents are there for you and supporting and helping you when you need it
I have exactly the same thing you have. Thank you for sharing. I also don't like to live in darkness. Sunlight is to sharp for my eyes. I always wear a cap and sunglasses. Have faith ...👌
Hi, thank you very much for reaching out to me and for watching this video! It is great to hear from you! It’s nice to meet you as someone else with retinitis pigmentosa. I agree, I do not like living in the darkness and really enjoy the sunlight even though it is very bright and it hurts the eyes. I hat and sunglasses is always a great idea! It is recommended for all of us with retinitis pigmentosa. Thank you again for watching this and for reaching out to, I appreciate all of your support here on the channel and thank you again for subscribing! I hope my videos are helpful and that my future videos are going to be helpful as well! I look forward to talking and getting to know more about you :-) Matt
This video made me cry.
I have RP too and your story is so simmilar to mine, I was diagnosed around 10 years ago at the age of 15.
Thank you for telling me your story Matt, it helps me cope with my own.
Hi! Thank you so much for watching this video and for your comment. It sounds like we are very similar in the sense that we were both diagnosed at the age of 15 and then our stories are so similar. That is interesting, I have actually only talk to you at one or two other people who are diagnosed at such a young age. I sincerely appreciate having you here on the channel and three hearing from you, thank you so much for reaching out and for your support on the channel. I hope we can talk and get to know more about each other. Have a great day and I look forward to hearing from you again soon.
My mother has just been diagnosed and she’s very emotional at the moment. She was diagnosed today and she’s aged 61. I believe it was more a late diagnosis but they have said she’s amazing to have as much vision as she has at the moment. She has affected peripheral vision at the moment.
I’m researching all I can and came across this video. I will show her your story. Thank you.
Hi Adam, thank you for watching and commenting. I’m so glad you found this channel. I want to help in any way I can. If you would like to talk or if there is a certain I can cover let me know. We are here for you. Thank you, Matt
Just added some information to this previous message.
Blind to Billionaire I will take you up on that offer, my friend.
Hi Adam, How are you guys doing today? I hope your mom is doing well. I have been thinking about you both during the difficult time. Let me know if there is anything I can do to help. I hope some of my other videos and future videos will also be helpful and provide value to you and your Mom. Thanks again, Matt
I'm soo glad your putting this out about RP Yes I also suffer with Renitist Pigmentosa I was Diagnosed at the age of 12 years old. We share the same stories My friend.. We need to Continue to educate others who dont know or understand about RP lets continue to build the RP Community Thanks again 😎👍
Hi my friend! Thank you so much for watching this video and for reaching out to me, it is always fun to meet another retinitis pigmentosa brother! It is interesting how both of us were diagnosed at such a young age and that we have the same story. I agree, we need to continue to share our stories and educate the general public about blindness and visual impairment. Thanks again my friend, I’m excited to hear from you again sometime soon! Matt
It’s so encouraging to have these videos! I married 11 months ago to my husband age 36. He has Ushers Syndrome. He often said the same thing when he lost his night vision. “How can they see so well at night?” He was born profoundly deaf and has hearing aids. In his teens he lost night vision and eventually lost his peripherals. He has only 5% in his front central vision. He’s so amazing! He just got a job learning g to read blue prints for an electric company. He’s so positive and helpful to others. I adore him. Okay, that’s enough lol So happy for you and your page!! God bless!!!!
When My son was born his optic nerve never made connection with his brain so he will forever be blind n that eye , he also has adhd, sever short term memory lose, dyslexia but im so amazed at the artwork he can draw but I’ve always lived in fear for his good eye an tired protecting him as much as I could but I never let him use any of these things to stop him or use them for excuses so he’d always try his best which school work was extremely difficult but he graduated 2 years ago n I’m soon to be grandma so proud , we all have our flaws we’re all broke dented or damaged in some kind of way some of our flaws show easier than most but if you just try n keep love in your heart an god with everywhere you go we will survive god bless us all
Oops forgive me I really meant to tell you how grateful I am for all the RUclips videos I watch them all the time on my tv so a lot I haven’t clicked the like button on my phone but you are amazingly strong god bless you an keep on keeping on
Thank you for your transparency. I have a different eye condition that does affect my peripheral vision, effectively making it useless. I noticed it a decade or more ago however; it was so hit and miss, I could not pinpoint what was happening. I had the same experience you discussed in terms of the stock answer, "You need glasses." It has taken years of asking questions to understand a relatively common combination of visual dysfunctions. Finally, I got answers just three days ago that made sense when matching my daily experience with my diagnosis. All the best to you and Cory👍
Great video! I really enjoyed hearing your story. I have a couple of friends who have RP. We enjoy going out to places, playing sports, taking walks, attending zumba classes, traveling by air, and going camping
Awesome for sharing...I know the struggle but there is a light at the end of the tunnel lol. But i too have RP since i was in Kindergarten i was diagnosed. Lived a normal life drove til i was bout 30 and chose to stopped after having two children and got into 2 minor accidents. But now I take public transportation for ppl with disabilities in my town. And I have family & friends that help me get around. I too use a cane & am learning how to use talking technology while I'm in school at a community college & plan to go to a school for the blind to learn life skills for the future. My children are growing and also know mommy cant see that great & they are sensitive to ppl with disabilities and try to help if they can. But I also have a brother to talk with that has RP and glad I can talk to him bout things due to our vision loss. Keep staying positive
Hi Melanie! Thank you so much for watching and commenting on this video. It is so nice to hear from you and I really enjoyed reading this comment and hearing how you work through your every day life. That is very interesting that you were diagnosed in kindergarten with retinitis pigmentosa and drove until you were around 30. It is so cool that your kids recognize your low vision and that are always available to help you and be excepting of you. I love that story! It’s also very interesting to hear that your brother has retinitis pigmentosa and going through the same situations. I’m glad to hear that you are attending school and going to be learning life skills for the blind. All of this is so inspiring and motivating. Thank you so much for sharing that information. It’s nice to hear that you’re also using talking technology and other assistive devices to help you with your low vision in your every day life. It seems that you are on the right trajectory for a very independent lifestyle as a little vision person. Thank you again for sharing all this information and for reaching out to me. It is so nice to hear from you! I look forward to talking and connecting with you again soon. Matt
@@BlindtoBillionaire I believe the only person that can stop you is yourself..we as visually impaired just have to figure our way of doing things. I just encourage you to reach out to people so you dont feel alone. Keep conquering ur goals. I myself am pursuing being a Physical Therapy assistant. I held myself back for years by saying "I cant" but I now say "I can" and currently am close to getting into the program. I'm at the end of finishing my pre-req's & it is difficult but I'm keeping up and looking forward to getting into the program soon. Keep sharing updates
Hi Melanie, that is so cool you are about to be excepted into the program. Congratulations, that is very exciting! I completely agree with you, we can do anything else that said if people can we just need to learn how to adapt to the situations. It’s so cool that you’re continuing to pursue your dreams and passions and being successful at it at the same time. I’m so excited for you to get into the program. Please let me know how it goes and keep me updated! Thank you again for all of your support and friendship, it has been so much fun connecting with you and getting to know you through these comments. Have a nice day, talk to you again soon :-) Matt
Stargardt can be effectively treated and reversed by God's mercy nano-grade eye drops.
Successful human tests, not animal tests because there's no reliable animal test for
Stargardt and PR.
Next month, human tests of RP in China will have conclusion.
Western medication can't effectively treat Stargardt and/or RP forever because western
medication can't trigger Muller glia for regeneration of optic nerve and photoreceptors.
Please browse www.godforeye.com
All glory belongs to God !
God bless you !
Thank you for Sharing your story i have RP but i don't have courage to tell my story i had all the same things as you now im scared i don't like to live in darkness i wish they find cure or solution for it wish you the best .
Thank you for watching the video and commenting, Marwan. I didn’t share my story for a long time and that’s how I felt, too. Sharing my story with my loved ones is helping me feel a little less alone and a little less isolated. I think if you were able to open up there may be a certain new lightness in your life, even if you still have darkness in your vision. Thank you again for watching, it was nice to hear from you, Matt
Blind to Billionaire Thank you Wish you The Best and Love surround you from everywhere.
Thank you Marwan! That is very kind of you! I hope you continue watching my videos and that you write more comments because it was nice talking to you.
Marwan Saad same here
@@BlindtoBillionaire my Lil daughter who's 1.5yr is diagnosed with RP. Any hope 😢😢😢
Had RP since I was 7. 27 now. Still pretty moderate vision you can say. I get the flashes, light sensitivity, night blindness etc. Struggle. Still in an insecure state after all this time. Where can I work? Ugh I can't drive. You know, those feelings. Thank you so much for your story. May Yah(God) bless us all.
Matt,
Thank you for sharing and explaining your vision issues.
I'm from India.. I'm 24 year old.. Having same disease....at night it become tough for me to go outside.. Because it is difficult to see.. Low vision.. Thnks sharing your story.. God bless u
Hi Pallavi, Thank for watching my video and commenting. May I ask what age you were diagnosed with RP? Do you use a cane? Thank you again for watching, it is nice to hear from you, Matt
Blind to Billionaire at the age 23
Cane??
Hi Pallavi, Im referring to a mobility cane to help you get around. They are usually white. Some people also call them a white stick. I have at least 2 videos where I feature the canes that I have if you want to check them out. Thank you! Matt
Blind to Billionaire ohh.. Sir share that video..
Nobody in my circle understands my problem . They talk without knowing any facts .. their opinion attacks and my heart reacts with negativity in my brain . I have no friends anymore . I have my son and my girl friend which I owe her my entire life . She is the light when darkness falls.
My birth place don’t see me as disabled so their is no help !
What am I worth if I can’t even work and Help my girl friend bring money to the table . ? She works but gets payed so little . I often wonder will she end up getting tired and leave me ?
But I’m thankful for having her in my life . Thank you god
Hi Ruben, thank you for watching and commenting. I appreciate you sharing your situation with me. I understand what it is like to feel isolated. While I am grateful for my wife, I miss how easy it used to be to make and keep friends. We can help each other through this and hopefully learn from each other. You deserve a loving girlfriend and I know you help her in so many ways. Just every day acts of kindness make a big difference. May I ask where you are from and what your vision is like? Thank you and I look forward to hearing from you, Matt
Hi Ruben! I hope you are doing well. I have been thinking about you. Matt
Blind to Billionaire
I appreciate you for replying and also for giving me the a change to feel like I have someone that cares of what I’m going through.
I’m from Mexico .
During the day everything is kinda alright. Except I can’t detect faces, I got to wait until I see you from up close to recognize someone . I often bump into walking children, parents go off on me telling me hurtful words .
My side vision is weak. If somebody is handing me something I won’t see it until they wave their hand right in my face .
When darkness falls I won’t survive unless my girl friend or my brother guide me through all the obstacles.
Hope to hear from you soon . Once again gracias my friend (thank you)
Thank you for sharing your story. I was diagnosed with RP as a teen. It's been a slow process for me. I just gave up my license when my husband and I retired to FL to be closer to our grands. I'm signed up for mobility training, but VERC is very slow moving. They have classes, but it's 10 weeks, 2x a week. They don't seem to understand that I help home school my grandson and can't commit to their schedule!
Hi! Thank you so much for watching this video into reaching out to me, it is great to hear from you. Thank you very much for subscribing to the channel, I’m very happy to have you here. It was actually very nice getting to know more about you too, it sounds like our experience with resumes pigmentosa is somewhat similar as we are both diagnosed as teenagers. I’m glad to hear that you’re signed up for the mobility training, however you’re right, the classes are time consuming and they do want you to be there for a long period of time. I hope you’re still able to figure out a way to fit it into your schedule even if you do not follow their strict classroom schedule. I still think the skills would be very helpful in whatever time frame you’re able to learn them. Thank you again for watching this video and for reaching out to me, it is so great to hear from you and meet you! I look forward to more conversations with you :-) Matt
@@BlindtoBillionaire It was funny, "oh we're starting a class in June"- I was excited because my oldest wasn't teaching during the summer so I'd have 8 weeks available for the 10 week course. Now, it looks like they'll start in August, when he goes back to work. I'm not going to be able to do that with my school year schedule. VERC really doesn't want to come out to the house twice a month for the lessons, but that's what it's going to have to be. We'll see what their response is to that bombshell is later this month.
LOL, this is funny! I hope it goes well and that they except your request. Sorry for the delay in getting back to you on this comment, I have been not been getting notified of her comments lately so it has been hard trying to keep up in a timely manner as they get buried and I do not know the comments are there. Sorry about that. I hope you’re having a great weekend! :-) Matt
@@BlindtoBillionaire No worries, just to update, VERC hasn't called so far this month. Monday, I'll be calling to set up a transportation appt, with the public bus system here in Jacksonville. Last time I tried to call, I was on hold for 20 minutes, too long of a wait for me. I moved the paperwork, to get it out of the way. The old adage, Out of sight, out of mind, has taken play. I've put it back on the table, we'll see if that works! Have a great weekend.
Hi, that is too bad you were put on hold for so long. Hopefully you were able to call and get through to somebody on Monday. Please keep me informed on how it goes if you would like to and if you were comfortable sharing. Thanks again, have a great weekend! I look forward to hearing from you again next week :-) Matt
Thank you for sharing. I have RP and this resonates with me
You are wonderful and soon you should have your help...we will get your new eyes! May God bless you!
Great video. Could T-Cell's possibly be a repair tool for R.P.? I had a very good friend that lost his sight after a Bacterial Meningitis infection, he was about 32 at the time. Years later, he had already very savvy on computers, using the Jaws software. He even assembled his own p.c. from individual parts he bought online. He had me check it over, before we plugged in the power, everything was done correctly, and he had me install his O.S. and drivers and once the Jaws program, and he took over from there. That was very inspiring to me, and is also to others that I tell the story to. A few years back he lost his fight with a weak heart and waiting for a transplant, I still miss him.
Hi Paul, thank you for watching my video and commenting, it is nice to hear from you and meet you. This is a very inspiring story, thank you for sharing. Your friend sounds like a very talented and bright person. It is always cool to hear stories like this. It sounds like you were a great friend and I'm sure that meant a lot to him. Was the Jaws software life changing for him?Thank you again, I look forward to hearing from you again!Matt
Thanks for sharing your story Matt
Itwas exactly
My life's storyyy..im 26 and just figured i had rp 2 weeks ago..
Hi Noelia, thank you for watching and commenting. I’m sorry to hear about your recent diagnosis. I really hope that you find my videos to be of some help, but also that maybe this community can help, too. I would love to answer any questions you have or to just be here to support you. There are good days and harder days but I really hope we can be there to help each other. Are you from the United States? What kind of things do you like to do? Thank you, Matt
Stargardt can be effectively treated and reversed by God's mercy nano-grade eye drops.
Successful human tests, not animal tests because there's no reliable animal test for
Stargardt and PR.
Next month, human tests of RP in China will have conclusion.
Western medication can't effectively treat Stargardt and/or RP forever because western
medication can't trigger Muller glia for regeneration of optic nerve and photoreceptors.
Please browse www.godforeye.com
All glory belongs to God !
God bless you !
Noella Janeel Brotonel hello Noah my name is David I found out I had RP when I was four and saw a specialist in Chicago Illinois I am now blind and 51 I know how hard it is to learn how you have it and to go through it hope all is well keep your head up it gets better!
Noella Janeel Brotonel sorry! Not sure why that came out like that! It’s supposed to be Nola.
Very interesting. ..thanks Matt for sharing !!!
Hi matt, great video about your story with RP. It's now possible to adapt games in school that involve catching a ball. There are balls that have bells in them that you can hear when you have to catch one.
Hi, thank you for watching this video. I’ve actually been meaning to redo this video. It was one of the first videos I made shortly after starting the channel so I would like to redo this one at some point. Yes I’ve heard of that, that sounds really cool. I have heard of beep baseball. It would be interesting to try one of these devices. Thanks again for watching this and for telling me about the adaptations that are not available! Matt
I can totally relate man! I hope there's something that they can do to bring back our vision.
Hi! Thank you so much for watching, commenting, and subscribing on this channel! It is so nice to hear from you and meet you too. It’s nice to hear from you. I agree, it will be so nice when the day comes that there’s a cure for RP. I actually think that day is going to be sooner than later. There are so many advancements in the medical field and our RP research right now. There are a lot of clinical trials and in encouraging news coming from the research being done on retinitis pigmentosa. May I ask, at what age were you diagnosed with RP? Thank you again for watching, I look forward to hearing from you again soon! Matt
Stargardt can be effectively treated and reversed by God's mercy nano-grade eye drops.
Successful human tests, not animal tests because there's no reliable animal test for
Stargardt and PR.
Next month, human tests of RP in China will have conclusion.
Western medication can't effectively treat Stargardt and/or RP forever because western
medication can't trigger Muller glia for regeneration of optic nerve and photoreceptors.
Please browse www.godforeye.com
All glory belongs to God !
God bless you !
Thank you for sharing your story. I’m watching this in 2024 after regaining some sight from DIABETIC RETINOPATHY.
I am patually sighted with limited vision and I have have had cataracts in both eyes for almost four months now that interfers with my low vision loss.I wear glasses and sunglasses and I am 57 years old and I have been using a white cane since the age of 19 right out of high school after I graduated.I am highly sensitive to sunlight etc
Great to listen i was born blind
Hi! Thank you so much for watching this video and for the nice comment. I’m glad you enjoyed it. That is very interesting you were born blind. You have a lot of great videos on your channel and very insightful. Thank you so much for everything you’re doing for all of us in the blind and visually impaired community. I really enjoyed watching your videos! Thanks again for reaching out to me, Matt
@@BlindtoBillionaire i dont have lots of words to thank you. .
Your the man bro I have rp from new Zealand
Hi! Wow, welcome from New Zealand! That is so exciting, thank you very much for being here :-) it was so great to hear from you and meet you too. This is an amazing community and I’m always here to talk, give support, and friendship if you were ever want to reach out. Thanks again for the comment and for watching this video, it is so great to hear from you! Have a great day and I look forward to talking again soon. Matt
I am also suffer from rp and I also facing all problems which you mention in video sometimes its very difficult to explain our problem or physical condition
Hi ya Matt Thank you for sharing your story This really touched my heart May god bless you always Take care of yourself Your awesome!!!!!!!!
Thank you, I’m so glad that you enjoyed this video and learned a little bit more about me, that is so cool! I really do appreciate it, hope you’re having a nice day :-) Matt
My dad went blind to from degentertive .and then a doctor got something in other eye.no he his blind and he is still learning how to deal with this .
Hi Matt, Thank you for sharing your video. My uncle 57 year who is living in India has been suffering from RP since childhood and lost his 70% vision now. He couldn't see at sunlight and dark. Is there any low vision aids available in US or any where?
Hi matt I am from India and have a same disease.I really liked the way you told your story. Nice video
Hi Prateek, I’m so glad you found my channel and commented. It’s so nice to hear from you. Thank you for the nice comment about my video. May I ask how old you were when you were diagnosed with RP? I’m glad you found my video to be helpful. I hope that some of my other videos and my new videos will also be valuable to you. What kind of things do you enjoy doing? Thank you again, Matt
At 13. in year 2004
Hi Prateek, thank you for sharing. What kind of things do you like to do? What is your vision like now? Thank you, Matt
Now I am not able to see anything in sunlight! In Nite I can see little bit
Hi, it is nice to hear from you again. Thank you for sharing that information. Do you still have light perception, or are you not able to see light either? What do you enjoy doing for fun, or your hobbies? I hope you're having a nice day, I look forward to hearing from you again! :)Matt
Hi, thank you so much for sharing your story. I have cone dystrophy. I have been wondering about this topic and so glad I found you. Subscribing. Thank you so much.
Hi Bwaithaka! Thank you for watching, commenting, and subscribing! That means a lot to me. I’m so glad my video was helpful. I hope you find some of my other videos just as helpful. Thank you again for your support, Matt
Stargardt can be effectively treated and reversed by God's mercy nano-grade eye drops.
Successful human tests, not animal tests because there's no reliable animal test for
Stargardt and PR.
Next month, human tests of RP in China will have conclusion.
Western medication can't effectively treat Stargardt and/or RP forever because western
medication can't trigger Muller glia for regeneration of optic nerve and photoreceptors.
Please browse www.godforeye.com
All glory belongs to God !
God bless you !
Matt I’m also visually impaired and is suffering with do you know gradual deterioration but I don’t live with RP so I can’t really relate but you’re the second RUclipsr I know I know Molly back he’s also as a friend of RP I think you should check her out
HEY MATT - WE HAVE USED IMMUSIST + SEA WEED + EDTA TO REVERSE CATARACS, STROKE DAMAGE , CANCER, AUTISM, ETC. DO YOU THINK THIS MAY HELP - AS THERE IS NO OTHER TREATMENT AVAILABLE?
Hi matt, i know that rp goes together with night blindness and also color blindness. And you said that your vision has gone almost completely over the past 6 years. So i was wondered if you now still can some things remember how they looked or that you can visualise thing in your mind. And do you still know the favourites things you saw once or things you hated or the funniest? Love sabrina
Hi Sabrina, Yes, I can still vividly remember what everything looked like when I had sufficient vision. In general, I just enjoyed having the ability to see everything. My memories are clear and I still dream with clear vivid images and color. Even though I can’t see what around me, I paint a picture in my head of how I think my surrounding look. Every time I go to certain places they look a certain way in my head. Thank you for the thought provoking question. Matt
Good attitude friend and good video. Thnx.
Hi! Thank you so much for watching and commenting on this video. It’s so nice to hear from you and meet you too! I am glad that you enjoyed this video and that it provided value. Thank you for all of your very nice words and for reaching out to us! I sincerely appreciate your support and that you subscribe to this channel! Thanks again, I look forward to hearing from you soon. Matt
Hey Matt, I am legally blind in my left I from a stroke I had almost 4 years ago. It’s getting to where I can’t see at night to drive at all. Do you have any information that can help me?
SO WERE THERE TIMES THAT WHEN YOU COULD SEE WHEN SOMETHING HIT THE FLOOR THAT YOU DID SEE? LIKE IF IT FELL IN YOUR CENTRAL VISION? I HAVE TROUBLE WITH THAT, IM 28 NOW AND I HAVE TO BACK UP TO MAKE THE VISUAL AREA BIGGER, SOMETIMES I REALLY BREAK DOWN CRYING BEC I KNOW ITS RIGHT THERE, AND IM TOTALLY MISSING IT...
Hi Rae! Thank you so much for watching and commenting! It’s nice to hear from you! It’s so interesting that you mention backing up to see better if you drop something on the floor. I used to do that same thing and it helped. It was like I had a different angle and I could scan the horizon better. Just like you mentioned I was increasing my visual field by backing up. In response to your question, yes, there were times when I would drop something and I could look down and see it immediately. This would occur when the item I dropped landed within my central visual field, allowing me to find it quickly. It can be really frustrating but know that you have a community here of people to support you. Thank you and I look forward to hearing from you in the future, Matt
Rae klein hello Ray my name is David. Yes they used to do that then I found out that I needed to start letting my ears become my eyes and stop trying to use my eyes it’s hard to do but it Hass to be done I have found if I drop stuff now I don’t even have to be facing it I can tell you exactly where it is on the floor behind me or in front of me or decide decide and I am only off by inches if any LOL! Hope you’re doing well
Hey my friend, great to hear from you! Yes that’s so true, I do the exact same thing! That’s awesome, it’s nice to read your comment
Hi m also diagnosed with rp when I was 1 year old...now m 30...I can't see in dark but day vision is 100% perfect...do you think I am really retinitis pigmentosa patient or it is any other disease???plz reply m very worried
I have this too, there is sonething called Congenital stationary night blindness....its like RP but it doesnt progress. Or it could be RP with late progression.
thanks you said it so well I have rp. Nobody understands because I look like I can see so people dont know how to deal with me and im still in denial. much love to you. annette kozlowski
Hi! Thank you so much for watching this video and for your nice comment. It is great to hear from you and connect with you. I can definitely be a tough situation as it is very difficult to understand and nobody recognizes what we are actually going through. I just want you to know, you are safe here in this community to talk about anything you want and I am always here for you if you ever need to talk about anything. Never hesitate to reach out to me. I appreciate you trusting me and reaching out, that is great!Thank you once again, I appreciate your support and look forward to hearing from you again sometime soon
I commend you on such a great presentation. I too, have RP. Diagnosed at 35 and will be 55 in the fall. I can relate to everything you spoke about. I just got my stick yesterday and I am terrified. Mine progressed rather slow, and this makes it a bit harder to accept. I am trying to stay encouraged. Thank you for sharing.
Hi Othello, Thank you for your comment! Getting a cane is a huge step and difficult to accept. Are you going through formal mobility training or are you going to learn on your own? One positive of having the cane is that people are aware and give you space so there are less awkward collisions. Thank you for watching my video. If you want me to discuss any specific topic or question, let me know! Thank you, Matt
Hi Othello! You inspired me to make a video about my experience using a cane. I hope your first week with your cane went well. Here is the link if you want to check it out. Thank you, Matt
ruclips.net/video/XZ_oGU4wMUE/видео.html
Stargardt can be effectively treated and reversed by God's mercy nano-grade eye drops.
Successful human tests, not animal tests because there's no reliable animal test for
Stargardt and PR.
Next month, human tests of RP in China will have conclusion.
Western medication can't effectively treat Stargardt and/or RP forever because western
medication can't trigger Muller glia for regeneration of optic nerve and photoreceptors.
Please browse www.godforeye.com
All glory belongs to God !
God bless you !
I have the Same Condition.
Hi Reditd! Thank you for watching and commenting! At what age were you diagnosed? What is the extent of your vision loss? I am so glad you found this channel and I hope you find it valuable. Feel free to ask me any questions. Thank you again, Matt
Stargardt can be effectively treated and reversed by God's mercy nano-grade eye drops.
Successful human tests, not animal tests because there's no reliable animal test for
Stargardt and PR.
Next month, human tests of RP in China will have conclusion.
Western medication can't effectively treat Stargardt and/or RP forever because western
medication can't trigger Muller glia for regeneration of optic nerve and photoreceptors.
Please browse www.godforeye.com
All glory belongs to God !
God bless you !
Hi I have RP I'm 37 years old and I still driving, I would like if you can tell me what make you to realize it was time to stop driving, thanks.
Hi Zarray, thank you for watching and commenting, it is nice to hear from you! This is a great question, I will actually make a video for you to answer this question in more detail. In a short version, of here is the simple answer... I started driving when I was 18 and I stopped driving when I was 21. From the time I got my license, I knew in the back of my mind that i probably shouldn't be driving, but as a teenager, freedom was very important to me. After almost three years of driving and numerous close calls, I decided it was finally time to give up driving. I also had a couple small accidents during that time and was becoming increasingly more nervous with every drive I took. With the encouragement of my parents, we decided in the summer of my 21st year, i stopped driving and haven't driven since. I will give you more detail in my video answer. Thank you again for your support and question, I look forward to hearing from you again! Thank you, Matt
@@BlindtoBillionaire I will waiting for that video God Bless
Hi Zarray! I hope you are doing well! Here is the video I made about driving. I hope it helps! Thank you, Matt When to Stop Driving as a Person with Retinitis Pigmentosa or Low Vision ruclips.net/video/UhAMsFWIByA/видео.html
Hi Rizwan, I stopped being able to drive when I was 21. Do you know which gene is causing your vision loss? I feel like ours is similar. Thank you for commenting! Matt
Hi Rizwan! I completely agree. Even the people I’m closest to don’t really get what I’m going through or the severity of my vision loss. It can be really isolating and frustrating. I’m glad to have a friend like you who gets it. I hope we can help each other. Matt
Hi I'm Qam. I'm suffered from RP. It's really hard. Sometimes I'm really down and think to myself this world is not for me. I don't know when it started. I was a normal independent young boy in my school college. Playing hockey football. Enjoyed my life. Its bee 20 years it bothers me alot
Hi, thank you very much for watching and commenting on this video, it is very nice to meet you and hear from you too. I am so glad that you reached out to me about your concerns. That is the whole purpose of this channel and community, to offer support and friendship to anyone and everyone. This is a really great community that we have here that allows you to connect with others who have retinitis pigmentosa along with me because I have it too. I’m really glad to hear that you were able to live a normal life when you were younger in school. That is very important and exciting you had that opportunity. Now, with your change in lifestyle, we just need to re-define your purpose in life with the changes you’re experiencing. May I ask, do you still have some vision? If so, are you still able to do any of the activities you previously enjoyed in life? Like, play sports, watch sports, or any other activities like that. Thank you again for reaching out to me, I hope this message helps and I look forward to hearing from you. Have a nice day, talk to you soon. Matt
Hi, is everything all right? Are you doing OK? I just wanted to reach out to you again and make sure that you’re doing OK. Please, feel free to reach out to us at any time. I am happy to talk with you or just be her as a friend for anything you need. I hope you have a great week, I look forward to hearing from you! Matt
@@BlindtoBillionaire Hu Matt thanks for hour reply. Yes my whole life is changed I've still got central vision and thanks to Almighty ALLAH.
I list Att my peripheral vision. I oibtless to talk about night. I can't imagine myself b going out in dark. But Matt this is real world hou have yo live for others. Cos useless person like me is OK art if thus world. My little boy he's 6 wanted me to go for dinner last week. I went with them he supported me alot. Held my hand and took to table. Bless him he's a light end of tunnel. When I back from dinner I cried why ALLAH made me like this......
I m a daddy I should fo all those things yo my family but thats eoild be my wish.
I ve got real a big complaint to these restaurants. They should have done courtesy bad bus ioned people. The should designated some aeras with enhanced lighting for poor vision people.
But that's only my thinking.
......
Hi, thank you very much for leaving this comment. It is great to hear from you again. He can be very tough with vision loss. It is so nice that you have a loving family and that your son is so helpful toward you. It is so sweet of him to help you to the table at the restaurant the other night and to help you out. I agree, it can be difficult walking into dark congested restaurants. Did you ask them for a seat with additional lighting? Maybe in the future, you could ask for a table that offers additional lighting because you were low vision. These are just some thoughts to hopefully make your life a little bit easier. Thank you again for this comment, I hope you’re doing well and I’m always here to talk to you if you need it. Have a great weekend, talk to you soon, Matt
Stargardt can be effectively treated and reversed by God's mercy nano-grade eye drops.
Successful human tests, not animal tests because there's no reliable animal test for
Stargardt and PR.
Next month, human tests of RP in China will have conclusion.
Western medication can't effectively treat Stargardt and/or RP forever because western
medication can't trigger Muller glia for regeneration of optic nerve and photoreceptors.
Please browse www.godforeye.com
All glory belongs to God !
God bless you !
I m a herbalist andI too suffer from RA. I was diagnosed very young.
Hi, thank you so much for watching this video and for reaching out to me. It is great to hear from you and meet you too! That is very interesting, just know that this is a supportive community here on RUclips so if you never need any support, friendship, or camaraderie, feel free to reach out to us at any time. We are so happy to have you here on this channel and we look forward to connecting and getting to know more about you. Thanks again for all of your support, we are very excited to have you here! Thanks again for reaching out and for watching this video, talk to you again soon.
What do you now about
IrisVision Retinitis Pigmentosa Glasses
we are on the same boat
i'm 31 years old and i have Retinitis Pigmentosa
right now i facing bad times when i read and write
I have had similar experiences just like you when i was kid till now
by the way i'm from algeria
i hope one day they find a cure for it
faith...hope...
Hi! Thank you for contacting me with your story. It’s cool to talk to someone who is similar in age to me and had a similar childhood. If you have questions or just want to talk sometime feel free to ask. Thanks for your comment. It was nice to hear from you. Matt
Just want to share this story with you on one of your videos . u were saying u didn't know how your wife look . and u were asking her how she looks i think she is very beautiful the outside and the in side . i meet my fiance. On a dating website five years ago. And he was not all that attractive. To me at all but i gave him a chance and i began. To love him because of the man he was i stop looking on the outside and look what on the in side . to say all of that. because u can't see your wife. The Beauty. Is already there. In so many way .in joy you're video so much.. Make me think about life differently. God bless u and your wife .. Thank for all your help.....
I lost my vision too, I have occular Rosacea,
What was the site on your video for the AMD? I haven’t been able to relocate it.
Hi, I am not sure exactly what I specifically discussed in this video, I need to watch it in order to get the exact details for you.
I have also rp.any treatment for rp?
The video with all the sight related channels,could find it to get tjet the AMD site giventhank you in advance for helping.
Hi! The latest video that we did this past Thursday features 40 channels, otherwise we did this project last April featuring 45 channels in about a month later featuring another 25 channels. I hope that is helpful, if you just scroll through all of our videos, you should be able to find them that way
What about black spider spots.
I have this condition
Hi Haroon, Thank you for watching my video and for commenting. Do mind if I ask how old you were when you were diagnosed and how old you are now? I feel like this diagnosis comes with good days and difficult days. I’m glad you found these videos and if you have any topics you want me to cover or questions for me let me know. Thank you, Matt
Blind to Billionaire hello, I was diagnosed with It when I was 3 I am 20 now and ok np
Hi Haroon, can I ask another question? What do you like to do for fun and or what do you do for work? What is the extent of your vision loss? Thank you,
Matt
Blind to Billionaire I'm currently working at a biscuit factory my vision with rp is bad 24/7 I see flashes in my vision and at night I can't see anything all the flashes cover my eyes.
I'm starting to lose my perifial vision.
My friend says it's like looking through a drinking straw
Hi, thanks so much for watching this video. I think that is a great analogy. I think that is very true and accurate. Basically all of the other peripheral vision is done while the central vision is there but yet very small. I think that’s a good analogy. Thanks so much for watching and for the comment :-) hopefully your friend is able to check out the channel and some of the videos, it would be great to see that person here :-) Matt
Jesús will heal you have faith
Hey hey! I am wondering have they ever found out where retinitis pigmentosa comes from? Or how it even started or where it even started? Food for thought! Talk to you later my friend
Hey my friend, good morning. That’s actually really good question, I don’t think we know. However was interesting, I actually took a couple of genetic tests a couple years ago to determine which gene mutation is causing my retinitis pigmentosa. After months and months of waiting and a couple different genetic test, I finally got results back and they determine which Jean is mutated causing my retinitis pigmentosa. Very very interesting stuff, I created a couple videos about it back then! Either way, thanks for the thought provoking comment :-) hope you’re doing well, will see you in a couple hours.
Blind to Billionaire 👋😎👍
Thanks my friend, you’re cool
Good afternoon Matt and Cory! Say? Do you guys have a Facebook page? If so shoot me a request would love talking to you more. God bless you both talk at you later
That’s a good question, in fact we do, however we never go on there. This is the best way to get in contact with us, RUclips always comes first before we check anything else! I hope that makes sense :-) thanks again
My dad has this condition😭😭😭
Hi Jonella, Thank you for watching and commenting. I’m sorry that your Dad is going through this, too. I hope you find these videos helpful and if you need anything I am always willing to talk or listen. If you have any questions regarding RP or how you can help him please let me know. Thanks again, Matt
Blind to Billionaire thankss
Stargardt can be effectively treated and reversed by God's mercy nano-grade eye drops.
Successful human tests, not animal tests because there's no reliable animal test for
Stargardt and PR.
Next month, human tests of RP in China will have conclusion.
Western medication can't effectively treat Stargardt and/or RP forever because western
medication can't trigger Muller glia for regeneration of optic nerve and photoreceptors.
Please browse www.godforeye.com
All glory belongs to God !
God bless you !
Very handsome
I give up. They're not going to help us