Blind and Visually Impaired Community
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DAE have Cone Dystrophy here? (self.Blind)
submitted by clevername-here
I have degenerative cone dystrophy (not cone-rod, which I understand to be more common in comparison), and I have yet to find others with it. I’ve been dealing with the symptoms my whole life, but didn’t get recognized as VI or anything until I was 18 (I’m 20 now), so I grew up without accommodations, not knowing other VI people, no resources, etc.
So I have a couple questions, the main one being: does anyone here have just cone dystrophy? I’d also of course be curious if anyone has cone-rod and would like to share. Is it rare, or just uncommon, or have I just not been around enough people yet to get a good idea of how common it is? We narrowed it down to a genetic mutation that caused it for me, is that the most common cause? Has anyone seen posts online with people’s experiences who have it?
In truth, I’d love to both give and receive advice, or maybe just share my story, but I’ve yet to meet anyone with a similar situation, so idk if it would be useful or matter to anyone or just be clutter in the feed (I’m very long winded and it’s a complicated story LOL!)
TL;DR, I have no idea of the prevalence of cone dystrophy and would love to get a better idea/maybe share if someone here would find it helpful.
So I have a couple questions, the main one being: does anyone here have just cone dystrophy? I’d also of course be curious if anyone has cone-rod and would like to share. Is it rare, or just uncommon, or have I just not been around enough people yet to get a good idea of how common it is? We narrowed it down to a genetic mutation that caused it for me, is that the most common cause? Has anyone seen posts online with people’s experiences who have it?
In truth, I’d love to both give and receive advice, or maybe just share my story, but I’ve yet to meet anyone with a similar situation, so idk if it would be useful or matter to anyone or just be clutter in the feed (I’m very long winded and it’s a complicated story LOL!)
TL;DR, I have no idea of the prevalence of cone dystrophy and would love to get a better idea/maybe share if someone here would find it helpful.
PractisingPoetry 3 points 5y ago
I do not have cone dystrophy (Normal tension glaucoma here). Some reaserch suggests that it is quite rare. As for the gene mutation, yes that the only cause. Cone dystrophy is an inherited or spontaneous genetic mutation. That means that you either got it from on of your parents, or were just super unlucky and the mutation occurred by random chance.
clevername-here [OP] 1 points 5y ago
Oh okay! Yeah I got blood work done at Duke (thankfully I live in the area) with my mom at the request of my specialist to look at the genetics of it all. He said that the gene involved was only mapped very recently so it’ll be a lot of waiting for studies to be done the coming years before we know more :P
shaunwestern 2 points 4y ago
I have a mild case of cone dystrophy. I was diagnosed about 5 years ago and I am presently 60 years old. The primary issue that I have is visual acuity - the sharpness of faces at moderate distances and the bleaching out of images in bright lights. I can still perform all the normal activities , such as driving and reading but it takes a little more work.
let me know if you find out about any gene therapies or medications. Thanks for sharing
let me know if you find out about any gene therapies or medications. Thanks for sharing
clevername-here [OP] 1 points 4y ago
Hi!! I’m glad you’re still able to function with some normalcy, that’s great to hear! If you would like, I can PM you about what my specialist recommended the last time I was at Duke!
Cleeth 2 points 4y ago
Late reply here. I have cone dystrophy.
Shoot me a message if you have any questions :)
Shoot me a message if you have any questions :)
clevername-here [OP] 2 points 4y ago
Oh wow!! Thanks for replying, I really appreciate it!! Of course I don’t want anyone else to have to deal with it, but it definitely feels less isolating to confirm that there *are* others, they do exist even if I haven’t met them lol 😅 ❤️
Cleeth 2 points 4y ago
Yea it's definitely one of those lottery winning diseases hey. The only other people I know with it are extended family who I never see. It is very isolating. Where abouts are you from? I'm in Victoria Australia.
clevername-here [OP] 1 points 4y ago
I’m in North Carolina, US :) It’s crazy, I don’t have any family at all with it. I might have a long time ago, but we’re from Palestine, and the middle east’s medical records are lacking at best, plus everyone after my great-grandparents on both sides is in Canada, so anything there might have been certainly didn’t make it with the move :P
Why_you_no_like 2 points 5y ago
My son has cone dystrophy. He is 26 now and has slowly gotten worse over the years. He was diagnosed at 5 years old but refused any modifications In school because he didn’t want to be different from other students. He learned to listed rather than read notes on the board. He is also color blind so he couldn’t see anything on the chalk board or over head projector and very little on dry erase boards. He works for our business full time but he cannot drive. He depends on his family and wife to get him around town. He has learned to make adjustments for everything in his life and doesn’t use it as a crutch. I wish medical technology would catch up to this disease.
clevername-here [OP] 1 points 5y ago
Sorry for the late reply, I was out of town!
I know how he feels as far as accommodations, even after getting them at 18, I tried to refuse a lot of the more obvious stuff, like a CCTV in class, until I absolutely couldn’t do without it in my math class. I’m slowly becoming more and more color deficient, so I started to label a lot of my stuff recently (pens, markers, etc). I’d be legally allowed to drive if I tried (i barely pass the DMV vision tests and my acuity is still alright), but I refuse to do so because it’s a danger to myself and others, I just don’t have enough functional vision in daytime driving hours. I’m great at night though lol!
I actually very recently got an electric, seated scooter from Razor that goes ~20mph max, and I’ve been using it to get around my neighborhood and general area. There’s a lot of stuff that is relatively walkable near me, but it takes a 40 minute walk into a much more reasonable time frame, which lets me get stuff done more often. It’s also just really fun to ride LOL. It’s the Razor Ecosmart Metro :) Definitely doesn’t replace the help of people driving me to work/school/etc, but it lets me take some of the responsibility back!
I’m sorry that he’s dealing with it as well, but it also weirdly feels good to know I’m not alone. The specialist I’m seeing at Duke is really good, and he mentioned that there is a drug in clinical trials that *might* be helpful, down the road if it gets approved, so hopefully we can all look forward to that! He also suggested some supplements to slow the progression, he put through certain brands his own testing with a few other specialists in the field to see if they do what they claim as well as if all the ingredients are safe (since supplements aren’t regulated). They don’t need a scrip or anything, we just got them off Amazon. If he’d like to ask his own dr about them to find out if they’d help his case at all, I can PM you the names and specific brands, I just have to go find the bottles lol.
Thank you so much for sharing with me, I really wasn’t sure if I’d find anyone!! ❤️
I know how he feels as far as accommodations, even after getting them at 18, I tried to refuse a lot of the more obvious stuff, like a CCTV in class, until I absolutely couldn’t do without it in my math class. I’m slowly becoming more and more color deficient, so I started to label a lot of my stuff recently (pens, markers, etc). I’d be legally allowed to drive if I tried (i barely pass the DMV vision tests and my acuity is still alright), but I refuse to do so because it’s a danger to myself and others, I just don’t have enough functional vision in daytime driving hours. I’m great at night though lol!
I actually very recently got an electric, seated scooter from Razor that goes ~20mph max, and I’ve been using it to get around my neighborhood and general area. There’s a lot of stuff that is relatively walkable near me, but it takes a 40 minute walk into a much more reasonable time frame, which lets me get stuff done more often. It’s also just really fun to ride LOL. It’s the Razor Ecosmart Metro :) Definitely doesn’t replace the help of people driving me to work/school/etc, but it lets me take some of the responsibility back!
I’m sorry that he’s dealing with it as well, but it also weirdly feels good to know I’m not alone. The specialist I’m seeing at Duke is really good, and he mentioned that there is a drug in clinical trials that *might* be helpful, down the road if it gets approved, so hopefully we can all look forward to that! He also suggested some supplements to slow the progression, he put through certain brands his own testing with a few other specialists in the field to see if they do what they claim as well as if all the ingredients are safe (since supplements aren’t regulated). They don’t need a scrip or anything, we just got them off Amazon. If he’d like to ask his own dr about them to find out if they’d help his case at all, I can PM you the names and specific brands, I just have to go find the bottles lol.
Thank you so much for sharing with me, I really wasn’t sure if I’d find anyone!! ❤️
Why_you_no_like 2 points 5y ago
You aren’t alone for sure. There are others. I guess what makes me the proudest is that he never used it as a sympathy getter or an excuse to not do things. If you didn’t know about it you’d never be able to tell. That’s how well he is able to fool everyone. He was heavy into sports as a child. Especially football but once he got into high school and had to start playing at night he quit the team. The coaches begged him to stay on. They didn’t know about his eyes. He told us that when they throw the ball and he try’s to follow it, the bright lights make it disappear. He could play like a beast during the day but at night the lights blocked everything out. But in pitch black darkness, he can see like a cat!
It sucks but you can go on with a normal life you just have to do things differently than other people.
It sucks but you can go on with a normal life you just have to do things differently than other people.
clevername-here [OP] 2 points 5y ago
Definitely!! I totally feel him about the ball disappearing. I played volleyball in elementary/middle school and they always had me serve, because I was great at it, but as soon as we had to rotate and I had to actually watch the ball come back from the other side... nope lol, might as well not exist!!
I did marching band throughout high school without even knowing myself what was wrong so there were a lot of interesting clumsy moments because I couldn’t see LOL, but I have so many funny stories from it anyhow!! Muscle memory is an incredible thing, and thankfully I picked the one activity that is mostly muscle memory 😅
I did marching band throughout high school without even knowing myself what was wrong so there were a lot of interesting clumsy moments because I couldn’t see LOL, but I have so many funny stories from it anyhow!! Muscle memory is an incredible thing, and thankfully I picked the one activity that is mostly muscle memory 😅
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