Optic Nerve Hypoplasia Support Group

Optic nerve hypoplasia is a medical condition that results in underdevelopment of the optic nerves. Optic nerve hypoplasia can appear in one or both eyes, causing anywhere from a mild to serious visual impairment in the form of decreased visual acuity and visual fields.

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deleted_user 12/08/2009

Hello,

I have ONH, I am completely blind in my left eye and am short-sighted in my right eye. My right eye is unaffected by ONH as far as I know. I don't know why.

I wore an eye patch for a while when I was a baby as Doctors thought I just had a lazy eye (squint). Further investigation at Moorfields Eye Hospital showed that I had ONH.

At age 4 I had my first squint correction surgery. At 23 I had my second. I'm 27 now and very, very self-concious about my apparent squint. I'm not sure how bad it is as I tend to avoid mirrors and looking straight on in photographs. My family and friends are very kind and supportive and always tell me my squint is completely unnoticable. Hmmm, not sure if I believe that. When I pointed out an obvious pic of me with my squint my lovely old dad just told me it made me more beautiful and alluring :) Love him too!!

Anyway, that's me. I have had this all my life, I don't know any different. I drive (although not always well!), I work - I'm a secondary school teacher...but now retraining as a social worker. I guess I just lack confidence, I'm self-concious and 3d films bug me because they don't affect me :) I have no depth-perception...but I am me, and most of the time enjoy that! I've just never met or spoken to another person who has this affliction before.

xxxxx

deleted_user 11/14/2010

wow!!! you just explained me exactly.
i have ONH and am only affected in my left eye, I am 21 years old and i was diagnosed when i was 5, my mom noticed my eye always seemed be lazy but it was more when i was tired, and finally when i was 5 i told her i couldnt see out of my left eye. multiple tests were done and they tried patching and of course the patching did not work. i was then diagnosed with ONH i actually just had surgery to correct the lazy eye on october 28th, everyone told me i didnt need the surgery and they dont notice my eye, but i noticed all the time how it was not straight, when i looked in mirrors or photographs of me i could always see that i had a lazy eye, so yes i did the surgery to boost my confidence. people were telling me i was stupid to get surgery if it wouldnt improve the vision , but i am soooooo pleased with the way my eye looks now.

andrew128 04/11/2011

Thank God! I'm not the only one who can't get 3D movies.......I know exactly what you have been through. My squint is with my right eye when I am outside. I have nystagmus as well. I am all to familar with the self conscious aspect.

deleted_user 04/12/2011

Hello!

It would seem that we have pretty similar stories regarding ONH. I too had my doctors place a patch over my good eye (left) only to find myself running into walls and objects as a child for a couple weeks.

I am also pretty self concsious (sp) about my right eye which seems to go inward towards my nose. My wife and family say they can't tell but when I take off my glasses I get the "oh, well its still not....thad bad" response. Nice.

I am very...very frustrated with the hype of 3-D television/movies/games. I'm a bit of a tech junkie so... the inability to see 3-D has an effect on me psychologically, i think i can admit lol.

I'm afraid of surgery with my eye in case somthing goes wrong and im totally screwed. How was corrective surgery on the "lazy eye"?

deleted_user 10/25/2011

My daughter Kassidy is 14, and diagnosed at 2 months with ONH, also hypopituitarism (she had to take growth hormones). She is completly blind in the right eye, and has 20-200 vision in left. She will never drive, she has trouble in stores, and with recognizing people. She had surgery at 4 for nystagmus, which helped but is still there a little when she gets upset. As she gets older, and sees other kids doing more it is becoming difficult to see her sadness....

deleted_user 02/24/2012

WOW, I have been researching this lately, and found this...I was floored, especially with the 3D movie comments and squinting. It effects my right eye. Does insurance cover the surgery? ( i know it varies by individual, medical history, blah blah) but did insurance cover anyones surgery here? Is there any solution to improve vision?

deleted_user 07/27/2012

I am also a female adult with ONH both eyes but not legally blind. I have a nystagmus and although legally I could drive with glasses during the daylight with glasses...just barely, I don't trust my vision and fear hurting someone. I don't see things until they are right there. Glasses only improve one line on the eye chart, but at least I can read a couple lines. Nice to find this group. Never known anyone else who had ONH and I am 34!

deleted_user 11/05/2012

I am a 40yr old female with ONH. Mine is congenital and my mom, aunt, cousin and grandfather all have it. I am legally blind in both eyes. For some reason my vision has gotten ALOT worse over the past 7 or 8 years. I've always been independant and now thats slipping away and I hate it!!!

deleted_user 12/24/2013

wow, it feels good to know that ur not alone. I am 18 and was recently diagnosed with ONH. i am the kid who always had to sit in front of the classroom even though i didn't want to. Although i sat at the front of the class i still couldn't see things written on the board. Everyone tells me to get glasses but they never understood why i couldn't get one and i never bothered explaining it to them cause it annoys me. ONH has made my life really difficult in all ways i can imagine. I am 18 and cannot drive because of onh, i have to literally almost put my head in the tv to watch or play video games and i can't even play soccer well because i end up passing the ball to the wrong person. The length of stress i go true everyday can only be understood by u people.

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