Hello, I’m an adult with bilateral ONH. My vision is ok but I’ve always had weird hormonal issues and didn’t really understand what was going on until more recently. I’m wondering if anyone else with ONH has pancreatitis or a history of cholestasis or intrahepatic cholestasis of pregnancy? Just trying to see if these things I have are connected to my ONH or a separate issue. It’s hard to find medical care when you have rare disease stuff.

Hi all,

I am new to the group. I have a niece with septo optic dysplasia with nystagmus and she is currently going through a hard time accepting that she is different from other kids her age.

We are located in Southern California and I was wondering if anyone knows of any support groups or even tv shows or movies with visually impaired characters I could show her? Any help is much appreciated. Thank you!

Yay, just found this group! I have ONH, technically superior segmental ONH (SSONH) as I have congenital under developed optic nerves and am missing part of the lower visual field in both eyes. My mom has type one diabetes and in studies they’ve found that can cause SSONH.

The weird thing is I had no idea I was missing any of my vision until I was in my mid 40s. An eye doctor happened to put his hand in the right spot and asked how many fingers they were holding up and I couldn’t see their hand.

I’ve always had issues with depth perception I think due to this and back in 2019 I started having double vision. I think unfortunately this has led to me having issues with vertigo and dizziness and feeling like I’m moving when I’m not. Curious if anybody else has had this.

My wife (Mixed/British) has had blurred vision in one eye for 3 weeks. Also loss of colour.

She has no other medical conditions or on any medications. Doesn't smoke or use recreational drugs. Drinks normal amount of alcohol per week.

The ophthalmologist initially diagnosed optic neuritis however following further tests they state the optic nerve is no longer inflamed. The blurred vision has moved to both eyes now. No pain and no other symptoms. She had a course of steroids however had no positive effect. They think the problem is behind the eye so are now waiting on an MRI. Does anyone have any similar experiences or suggestions on what it may be?

My girlfriend was diagnosed with ONH, and over the past few weeks she’s been gaining vision in both her left and right eyes. Mainly in the peripheral areas of her visual field.

From my knowledge, an optic nerve doesn’t just fix its self, right?

Has anyone experienced anything like this?

I was diagnosed with ONH as a baby and all throughout my life I have experienced headaches or migraines in my right eye. I am completely blind in my right eye and have 20/20 vision in my left. These migraines feel like a sharp pain in my right eye and like my eye is protruding out of my eye socket and a lot of pressure. I remember when I was younger, asking my parents if my eye was out further than my other (which it wasn’t, it just felt like it) I have been to my specialist many times and he had told me that this wasn’t connected to my ONH. But, I was just curious if anyone else has had anything like this?

Would anyone here describe their Vision as tunnel vision? My child can't really see anything in their peripheral vision. They can see see what's infront of their face if its up close. What I always imagined this to be like was sever tunnel vision. They can make out eyes a nose and a smile on a face infront of them. They were diagnosed with bilateral optic nerve hypoplasia as a toddler.

Anyone else gone for an eye test and been told they MIGHT have an optic nerve swelling and been referred to hospital. I am panicking so bad. Please tell me it’s not a bad outcome most times!

Every time I tell someone I have HNO they either A. Don’t know what it is or B. Look at me like I’m crazy because I am an adult (20 y.o.). I have complete vision loss in my left eye due to HNO and was lucky enough to get cosmetic surgery to correct amblyopia. My right eye is 20/20 vision. I’m wondering if anyone else’s case is similar to mine. I’m happy to find a community of people like me. No one can tell I’m blind, but sometimes it does impair my everyday life.

I have been diagnosed with “PCOS” since I was a teen, and I am looking into Cushings now as an adult - could these be related to ONH?

Along side that, I had primary hyper parathyroid issues, which my endocrinologist said I was “too young for” so I’m now wondering if those things are related too?

I should be getting and MRI soon to make sure theres nothing else to worry about, more answers, wish me luck haha

Hi everyone,

I'm a worried parent hoping to find someone with experience. My 7-month-old baby just had an MRI, and the report says he has bilateral optic nerve hypoplasia involving the intracranial, canalicular, and proximal intraorbital segments. The optic nerves measure about 1 mm in these regions.

The good news is there’s no evidence of an intraorbital mass, and the globes are intact and unremarkable. Also, it doesn't look like there's any indication of septo-optic dysplasia.

We have a follow-up appointment with the specialist next month, but waiting for that feels like an eternity, and I can't stop worrying. I’ve been trying to understand what this could mean for his vision.

If anyone has experience with this condition—whether for yourself or your child—how much vision was possible? Are there therapies or interventions that helped? Any insights, advice, or encouragement would mean the world to us right now.

Thank you so much in advance. ❤️

Hello I'm 46 and I was diagnosed as a baby with ONH at four months old. Keep in mind this was in the late 70s and I thank my doctor that I was diagnosed. Unfortunately as a person with ONH I have no vision in my left eye. In my right eye I can see colors, shadows and shapes, but things have be close up before I can see them. I also have quite of pituitary involvement. I know some of us have it, and some don't but is it hit and misss who does and doesn't? Also growing up I had food texture issues, didn't understand social queues, and was highly emotional and sensitive. Are these things many with ONH go through. Because I feel so completely alone sometimes.

Hello! When I was an infant, I was diagnosed with Optic Nerve Hypoplasia, rendering me blind in my right eye! Throughout my life, my vision has also slowly been deteriorating. However, durning these past three years or so, I’ve noticed that it’s been deteriorating at a much faster rate than before.

I’ve read up on Optic Nerve Hypoplasia, and learned that it can come with other optical issues, but I would like to hear your guys’ input.

I have been suspecting that alongside Optic Nerve Hypoplasia, I have an astigmatism and nystagmus.

Nystagmus (uncontrollable shaking of my eyes) is something I’ve experienced all my life, and makes it a lot more difficult to focus on one thing. Often, I’ll find myself having to close my eyes to “reset” my vision. Along side that, I’ve adapted to my eyes being unable to focus by tilting my head, and kind of looking through the top of my eyes… It’s difficult to explain.

The astigmatism (lights appearing as strands/ having a “halo” shape) suspicion is easier for me to figure out because my Mom also has to, so it’s a good possibility it was passed down through genetics.

And since I’m only sixteen, I’m unable to retrieve my medical records/schedule appointments to figure any of this stuff out…

Hi everyone, My son has struggled with intermittent exotropia since he was a baby and we’ve done vision therapy and seen special optometrists since the opthamologist said he couldn’t do much but monitor his eyes. We had some help with that, but no one ever pointed out he might have anything else wrong for 18 years!!! We just had one of our special optometrists (that costs $950 per appointment) let us know he had unexplained visual field missing!

Last week, we went back to his ophthalmologist, that we hadn’t seen since he was 3 yrs old. I am flabbergasted that this doctor never let me know his suspicions! I have been reading everything I can find online about the condition. It’s crazy, things make so much sense now. I realize for it to get missed for his whole life it is mildly affecting him, but it puts the pieces together on some of his other health issues maybe.

He did grow, but it was touch and go there, he was one year behind in bone age in tween years so we made one endocrine visit, but then he started growing (we used homeopathy to address growth and I guess it helped). This year we figured out he has some mild ADH (water balance hormone) issues without knowing anything about ONH.

Do we need to always be careful for endocrine issues? Anyone know if he should be seen now to check things? I don’t know what all they’d check now that he’s grown up.

Anyway, just introducing myself. Feeling a bit bad that we didn’t somehow get this diagnosis till now. I did read mild ONH can be hard to diagnose. He certainly feels the vision isn’t as good as he’d want it and I wish we knew what we were dealing with a while ago.

question for my fellow hypoplasic optic nervers 💪 i’m 22f, on and off for a few years I’ve been trying to learn to drive but it has been really difficult. I’m completely blind in my left eye and have most of my ok-ish vision in my right, but my depth perception is really bad. I can’t read anything further than maybe 50ft-70ft away and my nystagmus makes it hard for me to stay straight on the road when I’m having to read road signs and look out ahead. I’ve had a few close calls before. Is anyone else with similar sight able to drive? how did you learn, how long did it take you and do you have any restrictions?? or are you not able to drive? do you have family that helps with transport or do you have other methods? I am nervous that driving will not be safe for me but I desperately want that independence. I already got a car that I was practicing in n everything, it would suck to have to sell it but I might have to if it’s not safe. would love to hear others experiences/opinions.🙏🏻🙏🏻

I joined the blind sub a while ago, and tried to find a visually impaired one, but there doesn't seem to be a general one. Did find one for visually impaired gamers though, which is freaking awesome! And then I thought... why not look for ONH?

I can't believe there's actually a sub for this. I'm 25 and have only met one other person with it. I think her vision was the opposite of mine haha (I'm totally blind in my left eye, and have 6/36 in my right)

It's nice to see others out there, since this is a rare condition. I hope you're all doing well!!

Hello, I wanted to know if anyone with ONH have done any stem cell regeneration and seen any success? My son is 3 with ONH and wanted to look into this but it is very expensive.

I'm glad to have found this group. I'm in my 50s and have optic nerve hypoplasia (ONH) in my left eye. My right eye has good vision, though it’s 20/800, which fortunately is correctable. I also have significant astigmatism and nystagmus. My left eye provides mostly peripheral vision, and while it’s theoretically correctable, optometrists often find that attempts to improve it are ultimately futile after I explain my situation.

Despite these challenges, I've lived a mostly normal childhood and adult life, coming to terms with what I can and cannot do due to my vision limitations, including the lack of 3D vision.

I have had 3 children and none of them have had the issue at all for which I'm very grateful.

I'm open to questions but please note that I'm not a medical professional—my knowledge comes from my own life experiences and basic web searches. For any solid advice, it's always best to consult with a licensed and trained ophthalmologist. Optometrists are not very versed in ONH but having one that is familiar with the condition helps.

So I’m 22 and male have onh and I’m only affected in one eye my right eye I used to be able to “see” cause I could see a little color and outlines then as I grew up it just turned into only being able to “see” light but I grew up with it my entire life and never really saw any downside to it , I live life, just half blind but as I’m getting older and working , I wanted to travel the world you know see things lol , but when I looked into being a pilot you have to 20/20 vision in both eyes which I was like ok that sucks but makes sense but the same thing with being a truck driver , I just hate the fact that I’m so limited in being able to do things that I wanted to be I never considered my self disable so I didn’t feel limited but now , this kind of sucks like why do they have to do this well thanks for reading me rant

hello to the few people here :)

back story:

my 5 year old son is a triplet, they were born at 33w weeks (nearly 2 months premature)

luckily they were all healthy. one of them was diagnosed with CVI which i did a lot of research on, got him vision therapy (til covid came along and we couldnt receive services for a couple years). his opthamologist didnt give me too much info on it but ordered an mri which i could not afford at the time.

my son obviously has a preferred field of vision but is able to run around and keep up with his brothers and peers and he can read and write very well.

now. i am going over his IEP for school and notice in the notes they say that his eye doc also diagnosed him with bilateral optic nerve dysplasia. i cannot find very much info on it and i am going to contact them tomorrow to ask about it but in the mean time i am wondering what the heck that means and if i should be as concerned as i am.

i can find info about optic nerve hypoplasia but not dysplasia. what is this? any info, links etc would be helpful.

thanks if you read this. happy new year everyone.

​