Understanding retinitis pigmentosa - John's story

John Thomas, in his 70s, has had a rich and varied career. He lost his sight from retinitis pigmentosa. Watch John tell his story and what living with sight loss means to him. This film is part of the Understanding Sight Loss guide for RNIB staff and volunteers

[@daisyquinn6202]

I really needed to hear this. Im in my early 30s and have RP. I relate to everything being said when he describes his early years. Its a constant fear of mine for my vision to leave me completely, to have to be dependent on others. Thank you for your words of encouragement 💜

[@avnut7]

Thank you so much for making this. I’m middle aged and am losing my sight. I know somehow I will be fine. I’ve got a wonderful wife whom I’ve been married to for for many years. I worry how hard it will be for her as I lose more and more of my sense of sight. God bless.

[@LittleRain681]

Thank you so much for this video. My son was diagnosed with RP two years ago near his 18th birthday. It can be so difficult watching your child go blind knowing there is nothing you can do. My friends and family have no idea how to support us and I have seen the backs of many people as they walk away as they do not understand. I know that I am not always going to be here and my main goal is to allow my son to be as independent as possible even though my fear can grip me at times. LIFE GOES ON and I only hope he finds love and connectedness that you both share.

[@sarsa1982]

Thank you for sharing . It was so lovely to see the support from your wife, you, make a great team.

[@dollygupta438]

Are you friendship with me please

[@melaniefurniss815]

Thank you John

[@shaun_star8737]

Touching.

[@markbeetham5118]

I am 56 with RP and have 7 percent vision left. You are a very brave man. I've lost far too much of my life already because of this nonsense. When my sight goes completely... So do I

[@brankobakic9744]

Were the same age bur i have about 10-12 degrees peripheral vision, but i can read 6 Rows on the eye chart with my left eye and 4 with my right!

[@rnibuk]

Hi Mark, we're so sorry to hear about the difficult time it sounds like you're having at the moment. We can offer emotional support and counselling as well as advice. We're here on 03031239999 or at [e-mail] (Monday - Friday, 8am - 8pm and Saturdays, 9am - 1pm). Samaritans are also available around the clock, 24 hours a day, 365 days of the year on 116 123 or at [e-mail].

[@markbeetham5118]

@@rnibuk I'm tickety boo. I'm just a realist. Anyone who really believes this is okay needs their head seeing to. What's left of me functions adequately thank you

[@taylorscott7402]

That's so sad to hear you are still suffering from this same disease. Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same disease, He can also help cure yours permanently

[@taylorscott7402]

1 year ago I was diagnosed of RP and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including RP , at first i doubted if it was real but decided to give it a try, when i contact this herbalist via his email and he prepared an RP herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 4 months of usage, I am now free from RP ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for help . He can help get rid of yours permanently.. Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE. ....

[@synappticuser5669]

Diagnosed with RP when I was 45 now 72, Reg S.S.I. 3years later. I don't have a sight problem I gifted it to the sighted years ago. They can deal with it. I am still robust, always been a physical risk taker but not foolhardy, I think if you don't take a risk you ain't living. What if John's wife was not supportive? My wife went through the roof when I was diagnosed, only interested in what she presumed was a loss of income. I'm still working. Eddie

[@TheDa6781]

It is a good life for him cause he has his wife still.

[@daddyelon4577]

i have a cousin struggling in life with RP isnt able to find a life partner

[@normantran4049]

A person eyes is their whole world. My Mom have this disease.

[@syedali-yj2nb]

Hi I am 60 year old suffering from retina pigmentosa, now my eye vision almost finished, living in pakistan(kar). Looking any advise regarding Retina pigmentosa treatment or make some improvements in my eye vision.. Thank in advance

[@DelackMediaGroup]

Praying for all those with this disease. Watch Robyn's story. She's a photographer with Retinitis Pigmentosa: kzbin.info/www/bejne/imLVhYWgotakr6c

[@BigSlimThic]

Mr Thomas, If you are reading this. In 2014 i starting to suffer the same thing. I first was diagnosed with "Chronic Migraine 'With Aura'". But after 5 years of suffering from this debilitating illness, my condition subsided. After some periods of irregular sleep, i have started to suffer night blindness. When i look at the television in a dark room, my peripherals would be blind. I am afraid its getting worse. I love you my brother! Thank you for your story. And may god bless you along your path to his kingdom.

[@taylorscott7402]

That's so sad to hear you are still suffering from this same disease. Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same disease, He can also help cure yours permanently

[@taylorscott7402]

1 year ago I was diagnosed of RP and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including RP , at first i doubted if it was real but decided to give it a try, when i contact this herbalist via his email and he prepared an RP herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 4 months of usage, I am now free from RP ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for help . He can help get rid of yours permanently.. Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE. ....

[@taylorscott7402]

@evette Jackson kindly send me your whatsap number and email address so I can help you forward it to the doctor okay

[@agriculturalpropertieswaya1663]

There is treatment for RP in Ayurveda. There is an expert eye doctor at District Government Ayurveda hospital at Asraamam, Kollam ( district), Kerala (state), INDIA who treats RP & other complicated eye diseases very effectively.

[@LittleRain681]

Drinking cows urine isn't going to cure blindness and most ayurveda medicines are banned in the UK as they are deemed unsafe.

[@HardeepSingh-mn2oc]

How you know ??

[@shanemandrell9116]

Did he just admit to wanting to become Autonomous Ultra Instinct. I'm over here wishing I could at least just become a Super Saiyan. I thought that was aiming high. 😅 Disclaimer: if you are not a Dragon Ball Super fan you will not understand this comment. Also this is to be taken as a joke. I actually have RP and understand what it is like to lose my sight slowly so I take this video serious and am in no way making fun of his/My situation.

[@dollygupta438]

Please friendship with me I have also, I am Indian but I like to talk with American or UK people

[@mistyknights8624]

I wonder why John has glasses on your eyes don't do nothing weird when you have RP but most men that have RP also have usher syndrome it runs with RP my husband has both he's had it ever since birth he is 39 now and his eyes is stable for the past 2 years all he does is take a multivitamin everyday I'm hoping his eyes stay for as long as they can

[@ironslavi666]

Hello. I also have Usher syndrome type 2. I am 34 years old. At the moment I only have problems with night vision, slow adaptation from light to dark and the so-called flashes before the eyes. I currently have no problems with daytime vision, I still drive a car during the day. What is the situation with your husband? Can he drive a car? Do you have vision problems during the day?

[@Islandman776]

@@ironslavi666 hey you sound like me how are you now

[@ironslavi666]

@@Islandman776 Hello. I am also in the same condition. I go for checkups every 6 months and take some nutritional supplements.

[@hawitekalignbeyene285]

Am 23 i diagnosed with retinitis pigmentosa am 23 Doctors told me i will end up blind and i can't do about it 🥺

[@ironslavi666]

You need to get genetic testing to check which is the defective gene. There is a treatment for the RPN65 gene, and in the near future there will be treatments for other genes that cause RP

[@HardeepSingh-mn2oc]

I’m 27 years old When i was 14 I suddenly got myopia -4 Everything was fine after 2 years my power got -5 again after 2 years -6 and the again -7 and at last on -8 Finally my number got stable then may 2022 i feel a ring in my vision like floaters but complete ring. Then doctor give multiple medications for weekness (hb level 8.5)after month eye doctor send me to another doctor and that doctor tells me I’m thalassemia minor (from mother) I start medication hb level increased and October 23 that ring got bigger from sides and again doctor after six months continued check ups he said my eyes are normal ignore it. July 2023 i lost more side vision Doctor said I’m RP. But still i got ICL August 23. Now i 5:41 lost more vision. Worse then tunnel vision. But I can see at night. I don’t have any other problem but Field is so short. In just 2 years. It was so fast and this is torture. Why I study hard i have many things that I didn’t did my plans all.. if I knew about it in my childhood Maybe I can live in better way. I lost so much time because I didn’t knew.

[@HardeepSingh-mn2oc]

I don’t even have any family history. Don’t worry My parents said they will give eyes 😂😂 They don’t know right now retina can’t donate. But I feel that in future we can see. Don’t worry. We are in 21st century Maybe full eye donation will possible. Anything can heppen. Be strong. If you worry then you will lost this beautiful time too. Just enjoy this moment. I’m going to too. Because maybe my eyes have life of 10 years And maybe i have just 5 more years. That I’m not going to waste in worry. Don’t tell anyone about your problem. Have regular check up. And do whatever you want to do. Because anything can be possible. Just motivate people for organ donation (eyes too) after their death. Good luck.