Blind and Visually Impaired Community
↑
7
↓
Seeking Out LHON patients (self.Blind)
submitted by ssj_iftekhar9001
Hello to my fellow blind brothers and sisters
I am a Leber's Hereditery Optical Neuropathy (LHON) affected patient. I lost my vision 6 years ago when i was 16 and after alot of hassle and confusion i was diagnosed with LHON while i was in Dingapore for the diagnosis.
I wanted to know if there are anymore LHON patients here and how they are doing with their vision and what type of medical treatments or procedures are they going through as a Leber's patient.
And has it benefitted them in anyways or not.
Eager to Hear everyones story
I am a Leber's Hereditery Optical Neuropathy (LHON) affected patient. I lost my vision 6 years ago when i was 16 and after alot of hassle and confusion i was diagnosed with LHON while i was in Dingapore for the diagnosis.
I wanted to know if there are anymore LHON patients here and how they are doing with their vision and what type of medical treatments or procedures are they going through as a Leber's patient.
And has it benefitted them in anyways or not.
Eager to Hear everyones story
theminidevil1 3 points 1y ago
I am also an LHON patient, just diagnosed 1 month ago with symptoms beginning just 3 1/2 months ago. I've been taking idebenone for 1 month and am trying to enroll in gene therapy trials/compassionate use programs but it looks like I won't be able to till the early spring. I have yet to experience bilateral vision loss, still pretty early on.
GGGGG540lk 1 points 1y ago
So I've also been taking the idebennone therapy for 10+ months now and for me it helped a lot. However you have to pay attention to smaller things like always take it during the meal. I usually take it in just when I'm halfway done with a glass of water. I read it in the leaflet that it can boost the affect if you take it in like this. I also take vitamin B2 and vitamin C is recommended as well. I have to take medicine for my bloodpressure too which would cause diarhea so I take probiotics (Normaflore) before going to sleep since proper digestion is also the key. I aslo don't smoke and consume any amount of alcohol. These can reduce the effect as well.
For me it took time until i could feel the effects. If we take the respondents 30% of them react within a half year and 80% of them in a year. This treatment basically increases the chances of vision recovery and/or the prevention of fhrther vision loss.
I hope I could help you or anyone who is reading this and in a similar situation.
I also wanted to ask you about this gene therapy. Where is this available and how much does it cost? Are they still in the process of testing it?
For me it took time until i could feel the effects. If we take the respondents 30% of them react within a half year and 80% of them in a year. This treatment basically increases the chances of vision recovery and/or the prevention of fhrther vision loss.
I hope I could help you or anyone who is reading this and in a similar situation.
I also wanted to ask you about this gene therapy. Where is this available and how much does it cost? Are they still in the process of testing it?
theminidevil1 1 points 1y ago
Hey man, glad idebenone seemed to help you. Can I ask how severe your case was before and after idebenone? I know its not easy to describe changes in your vision with just words to someone on reddit, but could you try to describe how significant the changes were?
As for gene therapy, I've talked to a lot of people about it, including Patrick Yu Wai Man from Cambridge. If you're interested you can email him and ask for a consultation. It does cost a few hundred pounds but I'd say its worth it. Any trials / compassionate use are over right now unless you're a citizen of France or England (two places Im aware of that are doing compassionate use). I live very close to Wills Eye Hospital where they are going to be starting this treatment in early spring, assuming the FDA approves it. The plan is to submit all the data on the trials and get a result about approval in December / January. The results have been pretty good on the whole with no real side effects, but it seemed like It helped people who were earlier in progression than those who were further along. Most of the testing was done on people under 1 year since onset, but Yu Wai Man said the next round of testing will be on people 1-5 years in. Not sure if they will limit the treatment to people only under 1 year when it comes around in the spring (I'd imagine they wont, but cant say for sure). Not sure about the costs... I am lucky to have good insurance but I am not sure how much they will cover.
I feel like I've learned a lot from research, different doctors around the world and my own doctor from UPenn, so lmk if you have anything else on your mind.
Good luck!
As for gene therapy, I've talked to a lot of people about it, including Patrick Yu Wai Man from Cambridge. If you're interested you can email him and ask for a consultation. It does cost a few hundred pounds but I'd say its worth it. Any trials / compassionate use are over right now unless you're a citizen of France or England (two places Im aware of that are doing compassionate use). I live very close to Wills Eye Hospital where they are going to be starting this treatment in early spring, assuming the FDA approves it. The plan is to submit all the data on the trials and get a result about approval in December / January. The results have been pretty good on the whole with no real side effects, but it seemed like It helped people who were earlier in progression than those who were further along. Most of the testing was done on people under 1 year since onset, but Yu Wai Man said the next round of testing will be on people 1-5 years in. Not sure if they will limit the treatment to people only under 1 year when it comes around in the spring (I'd imagine they wont, but cant say for sure). Not sure about the costs... I am lucky to have good insurance but I am not sure how much they will cover.
I feel like I've learned a lot from research, different doctors around the world and my own doctor from UPenn, so lmk if you have anything else on your mind.
Good luck!
GGGGG540lk 1 points 1y ago
Thank you very much.
I think I'm gonna DM you!
I think I'm gonna DM you!
ssj_iftekhar9001 [OP] 1 points 1y ago
As a LHON Veteran who had this for 7Years now haha :3
I woukd recommend to stoo taking Idebenone
I took them for 2 Years and got annoyed and shutted them down
But you can still go for em though.
Stay Strong though you have a rough ride ahead of you
I woukd recommend to stoo taking Idebenone
I took them for 2 Years and got annoyed and shutted them down
But you can still go for em though.
Stay Strong though you have a rough ride ahead of you
Tony030607 2 points 1y ago
Man shit y’all where 16 I started losing my vision 3 months after I turned 14 and j just turned 15 I take the same medication as y’all where are y’all located I’m in Texas and my doctor is out of ut southwestern I have a question so during the day my vision is ass but at night or even just in the dark jt gets better
ssj_iftekhar9001 [OP] 1 points 1y ago
Its tough to lose vision at such a young age and cope without or with someone supporting you . But i wish you the best on your future endeavors though.
Regarding the question, yeah i faced this one too. I can barely move about if its too sunny in the day but when niggt falls my vision stability gets a bit better or even if irs dark.
I have no good explanation why this happens but my best guess would be that our eyes don't have to be on so much stress trying to see in that state in such sunlight or light in general
Regarding the question, yeah i faced this one too. I can barely move about if its too sunny in the day but when niggt falls my vision stability gets a bit better or even if irs dark.
I have no good explanation why this happens but my best guess would be that our eyes don't have to be on so much stress trying to see in that state in such sunlight or light in general
kelpangler 2 points 1y ago
I have not been officially diagnosed with LHON but all signs point towards it. My vision deteriorated last year in a matter of weeks. It feels like just yesterday because I clearly remember all the fear and panic I was experiencing. But there’s a pretty tight-knit LHON community that really helped me cope. Are you on Facebook? They have a group page at https://www.facebook.com/groups/29805437752/?ref=share.
ssj_iftekhar9001 [OP] 1 points 1y ago
Its been 7 years in my case and i was 16 when this happened but mine still feels like it was yesterday cause i can vivisly remember what type of a shitstorm i had to go through cause of this but nonetheless life is still going on and i luckily am still going strong
So Best of Luck on your journey
And for the FB group if its "LHON Society" i am already a member
So Best of Luck on your journey
And for the FB group if its "LHON Society" i am already a member
[deleted] 1 points 1y ago
[removed]
Necessary_Wonder_510 1 points 1y ago
Hello, I am new to this thread but your post caught my eye. We found out about 20 years ago that LHON runs in our family. First an uncle in his 40's started to lose vision unexpectedly and a year later, my sibling who was 9 at the time started to lose their vision as well. You're right - getting a diagnose can be a long and challenging process.
He's been living with LHON since age 9 (now 29) and we both relocated to a major city with a great transportation system and a lot of walkable areas. This has been a game changer since we previoulsy lived in the SW USA where things are much more spread out making it harder to be independent. Side note: if you're in the US, the state you live in REALLY matters... support is not equal across all states and some have MUCH better benefits/support for the blind than others do.
​
Regarding LHON specifically, have you explored the $1 site? They have an annual conference we attended once and it was useful. $1
Having a smart phone and using voice to text has also been helfpul as well as Zoom Text (I'm sure already mentioned here)
If you have more specific questions, I'd be glad to ask him for you and follow up.
He's been living with LHON since age 9 (now 29) and we both relocated to a major city with a great transportation system and a lot of walkable areas. This has been a game changer since we previoulsy lived in the SW USA where things are much more spread out making it harder to be independent. Side note: if you're in the US, the state you live in REALLY matters... support is not equal across all states and some have MUCH better benefits/support for the blind than others do.
​
Regarding LHON specifically, have you explored the $1 site? They have an annual conference we attended once and it was useful. $1
Having a smart phone and using voice to text has also been helfpul as well as Zoom Text (I'm sure already mentioned here)
If you have more specific questions, I'd be glad to ask him for you and follow up.
ssj_iftekhar9001 [OP] 1 points 1y ago
Regarding the state i live in haha
Till now i'm the only recorded case in my country thus far 🤣 (Bangladesh)
So its VERY different over here to say the least
But the i'm glad that your cousin is livint a stable and happy life
If its not too much mind asking him what career paths can legally blind people take
Till now i'm the only recorded case in my country thus far 🤣 (Bangladesh)
So its VERY different over here to say the least
But the i'm glad that your cousin is livint a stable and happy life
If its not too much mind asking him what career paths can legally blind people take
This nonprofit website is run by volunteers.
Please contribute if you can. Thank you!
Our mission is to provide everyone with access to large-
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
scale community websites for the good of humanity.
Without ads, without tracking, without greed.
©2023 HumbleCat Inc • HumbleCat is a 501(c)3 nonprofit based in Michigan, USA.