Blind and Visually Impaired Community
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Optic Nerve Hypoplasia (ONH) - got diagnosed today (self.Blind)
submitted by cabc79863
Hello,
as I got the diagnosis of optic nerve hypoplasia today as I had only a suspected diagnosis before (since 2014) I am now searching for answers:
1. In my native language (German) there are almost no Information to find and especially no other people who have this diagnosis. I would love to exchange experiences and hear how other peoples life are affected by it.
2. I had a progression in my vision field loss and my problems with contrast vision since the last measurements from December. I read that this is rare. My doctor will prescribe me eye drops to lower my eye pressure because it could be damaging to my optic nerve that is already weak because of the ONH. Has anyone got more information on how it might look for me in 10 or 50 years? I am just 22 now and I want to make plans for the future.
3. How do you explain your problems to others and to doctors? I also got other health conditions that might be related: central coordination disorder (kind of like the German diagnosis for what some call dyspraxia now), autism, congenital low-frequency hearing loss, a tic-disorder with verbal and motor tics, hypermobility (without a diagnosis behind it yet just very bendy and a lot of joint problems). It is always the same and people tell me that my conditions and health are so strange and they can't understand them.
I know I might be not as much affected by this diagnosis as other people here. I am not blind, I just got vision field loss, myopia, astigmatism, problems with brightness and darkness and also problems with seeing contrasts. I get around with my sunglasses on bright days pretty well and don't go out in the dark anyway. I rarely bump into things and stuff. But I hope I might find some other people here to understand what I experience.
Thanks for reading.
as I got the diagnosis of optic nerve hypoplasia today as I had only a suspected diagnosis before (since 2014) I am now searching for answers:
1. In my native language (German) there are almost no Information to find and especially no other people who have this diagnosis. I would love to exchange experiences and hear how other peoples life are affected by it.
2. I had a progression in my vision field loss and my problems with contrast vision since the last measurements from December. I read that this is rare. My doctor will prescribe me eye drops to lower my eye pressure because it could be damaging to my optic nerve that is already weak because of the ONH. Has anyone got more information on how it might look for me in 10 or 50 years? I am just 22 now and I want to make plans for the future.
3. How do you explain your problems to others and to doctors? I also got other health conditions that might be related: central coordination disorder (kind of like the German diagnosis for what some call dyspraxia now), autism, congenital low-frequency hearing loss, a tic-disorder with verbal and motor tics, hypermobility (without a diagnosis behind it yet just very bendy and a lot of joint problems). It is always the same and people tell me that my conditions and health are so strange and they can't understand them.
I know I might be not as much affected by this diagnosis as other people here. I am not blind, I just got vision field loss, myopia, astigmatism, problems with brightness and darkness and also problems with seeing contrasts. I get around with my sunglasses on bright days pretty well and don't go out in the dark anyway. I rarely bump into things and stuff. But I hope I might find some other people here to understand what I experience.
Thanks for reading.
Remy_C 4 points 2y ago
I was born with Optic Nerve Hypoplasia, and honestly I didn't even know you could develop it. I understood it to be an underdevelopment of the optic nerve. Anyway, I'm 38 now. FOR me it's a really hard condition to explain to people. I have sight in the corner of one eye. I can see well enough for many things, but there's a ton I can't. The weird thing about it though is how vision interacts with my mind. Because my eyes themselves work normally, Most of what I see gets lost in translation once it gets to the brain. If I'm watching a movie or looking at a picture, Unless I have a point of reference, I might not understand what I'm looking at, even if contrast is good and it's large enough to see. It happens with colors too. I understand color and can tell the difference, but subtleties are lost. A chair may be brown or grey, but I might not tell the difference without really thinking about it.
I actually thought Germany was farther along in there study of ONH than anywhere else. I don't believe there is any corrective action available, but I actually haven't looked it up in a while.
The good news is being visually impaired is a lot easier nowadays than it used to be. It'll be a change to be sure, but if you find your vision getting worse and can adapt and get trained, it won't be the end of the world.
I actually thought Germany was farther along in there study of ONH than anywhere else. I don't believe there is any corrective action available, but I actually haven't looked it up in a while.
The good news is being visually impaired is a lot easier nowadays than it used to be. It'll be a change to be sure, but if you find your vision getting worse and can adapt and get trained, it won't be the end of the world.
cabc79863 [OP] 1 points 2y ago
I guess it is not developed but just no one ever really noticed it until I was like 15 as I started to have more vision problems. (I had a not so good eye doctor most of my life.) At least I would have thought it must be a different diagnosis if my optic nerve had shrunk right? It is really hard for me to understand that I probably had this my whole life and like got around (with struggles of course) but it is getting worse, my doctor said because a little nerve is more easily damaged by my high eye pressure and stuff.
" Most of what I see gets lost in translation once it gets to the brain. If I'm watching a movie or looking at a picture, Unless I have a point of reference, I might not understand what I'm looking at, even if contrast is good and it's large enough to see. "
That is exactly what I experience. I feel like the processing of visual information does not work well. Most of my dreams are without pictures and I also have aphantasia which means I can't generate pictures in my mind. Can this maybe have anything to do with the ONH?
You can not even find anything in German on YouTube about ONH and very little stuff with Google. And nothing is there about other people with the diagnosis and how they deal with it. If anyone got any resources in my language to educate myself I am happy to learn. My doctor told me that ONH often might come with other cerebral problems and could be related to my hearing loss and I learned it can be to my autism also.
Getting around with hearing loss and vision problems is still quite scary to me.
Thank you a lot for encouraging me about this. I just feel like I wasted so much time before the diagnosis where maybe the progression could have been stopped by lowering the eye pressure or at least I would have had a name for my struggles.
" Most of what I see gets lost in translation once it gets to the brain. If I'm watching a movie or looking at a picture, Unless I have a point of reference, I might not understand what I'm looking at, even if contrast is good and it's large enough to see. "
That is exactly what I experience. I feel like the processing of visual information does not work well. Most of my dreams are without pictures and I also have aphantasia which means I can't generate pictures in my mind. Can this maybe have anything to do with the ONH?
You can not even find anything in German on YouTube about ONH and very little stuff with Google. And nothing is there about other people with the diagnosis and how they deal with it. If anyone got any resources in my language to educate myself I am happy to learn. My doctor told me that ONH often might come with other cerebral problems and could be related to my hearing loss and I learned it can be to my autism also.
Getting around with hearing loss and vision problems is still quite scary to me.
Thank you a lot for encouraging me about this. I just feel like I wasted so much time before the diagnosis where maybe the progression could have been stopped by lowering the eye pressure or at least I would have had a name for my struggles.
Remy_C 2 points 2y ago
I have a really hard time with picturing things in my mind too. It's very annoying because I am a writer, and it would really helpful. I've also heard there can be other complications with ONH, and while I have never been diagnosed with anything myself, there are a lot of things about me which make me think there may be some truth to that.
Perhaps there are more advancements out there than the last time I read about all this. Might be time to do a little more research. The last time I looked a couple years ago there was a lot of study being done on ONH in either Germany or russia. I think there was even a clinic which was using some technique to improve certain visual issues; ONH being one of them. Who knows what the they will be able to do soon though. They were just able to 3d print a a part of the female reproductive system and the woman in question was able to carry and birth a child. So if that's the case, who knows what else will be possible soon.
Perhaps there are more advancements out there than the last time I read about all this. Might be time to do a little more research. The last time I looked a couple years ago there was a lot of study being done on ONH in either Germany or russia. I think there was even a clinic which was using some technique to improve certain visual issues; ONH being one of them. Who knows what the they will be able to do soon though. They were just able to 3d print a a part of the female reproductive system and the woman in question was able to carry and birth a child. So if that's the case, who knows what else will be possible soon.
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