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

    just found out...

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    recently i have just found out that my 3 month old daughter has optic nerve hypoplasia. we don't know how much vision she has or hasn't got and we are very confused about what the future may bring for her. she is due for a brain scan and more tests after xmas and i am trying to stay positive so we can have a good xmas. little is know at the moment but if any one can please help or give me any...
  • musicfairy

    Reactions to Sound, please Advise?

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    Hello. I am twenty one and have lived all my life with ONH. I am totally blind and have been since birth. I also have nestagmus. I am fine with my blindness, what I'm not so fine with is my relationship with sound. Am I crazy, or the only one who reacts really, really badly to loud sounds? Their's more than I can really fit into this post without muddying my main question, but Even with things...
  • Ala87

    ONH and life goals

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    Hello  I was born with ONH and just had my 29th birthday. I worked hard in high school and tried my first year in college but between my mom being sick and my sister having a baby young I helped them out a lot. I burned out now I feel like a burden and it is hard for me to get a job where I live. I want to do something to help others. To make some contribution. I am stuck and at a dead end. In...
  • JJsmama

    ONH and Genetics

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    I'm a 27 year odl female with ONH. I was diagnosed at the age of three. i also have nystagmus. I am also the proud mother of a seven week old baby boy. Over the last week or so, I have noticed that his eyes do not work together as they should. I'm afraid it could be nystagmus, which often presents in people with ONH. I have read that this condition is rarely genetic, but the term "rarely" implies...
  • Hello, my name is Vladimir, and I am doing an internship with the Rare Genomics Institute a non-profit based in the Washing ton DC area - and RareShare.Currently I am gathering information on Septo-optic Dysplasia aka De Morsier Syndrome, and Optic Nerve Hypoplasia and was wondering if anyone who suffers from the disease, or has loved ones with the disease, would be willing to participate in...
  • deleted_user

    ONH and how to cope

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    Hello I am a nineteen year old female. I have ONH in both eyes. I also have nystagmus. I don't see my eyes shake, but everyone else gets to. I am constantly blinking. Lately I have been noticing just how bad my vision really is.I have a lot of anxiety and depression, and I have a feeling that ONH is to blame for a good portion of it. If I spend time thinking or talking about my vision I am...
  • deleted_user

    I'm a female adult with ONH

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    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 son is 1 year old, he has ONH, He is blind on the both eyes ,we still didn't know does he sees some light or shadows. Sometimes it looks like he looked at me, right in my eyes, but it is only "empty look", he doesn't focus any item, toys...I researched online and read many stories similar fates, who found a cure with stem cells. in their stories, children's vision was restored. However, it...
  • deleted_user

    Life With ONH (Long Intro!)

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    So, i see that this forum isn't overly active but as there are so few support groups for ONH out there, I thought it would be a good place to start! My name is Robert and I'm 32 years old (33 on the 12th) and I've lived with ONH my entire life. Actually, until a couple of years ago, I never knew WHAT to call my visual condition due in part to being born and raised in a very rural part of the US...
  • springer

    optic nerve hypoplasia

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    I am 16 years old and i have onh. I was born with onh and if ya'll have any questions i'll be happy to answer them
  • deleted_user

    My fiancee has ONH

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    Hi! I'm Becky and my fiancee has ONH. He is the most amazing person. I am wondering if anyone in this group has a significant other with ONH or maybe yourself and can help me to further understand what my fiancee experiences. I want to support him in every way possible, but I do not want to stand in his way of progress.
  • springer

    How do you deal with things

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    I am having such a hard time dealing with my depression and I don't know what on earth to do anymore. I am so stressed out and I feel like there isn't enough time for all the things I need to get done.. I am angry and I need help to deal with this please help if you have advice send me a personal message thanks everyone
  • deleted_user

    ONH, maybe not :(

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    I was diagnosed with ONH when I was 12, (I am 24 now). I have about 20/150 in my right and 20/200 in my left. I recently started seeing a dark spot in my eye and spoke with my eye doctor who told me to get in right away. After tons of test nothing was found. In the report it mentions that there has been a noticeably loss of "visual field" in my left eye, and he reccomended me to another doctor to...
  • deleted_user

    Hi! Brand New and Eager!(long)

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    Hey everyone..my name is Kalli. Im 22 years old. Im a first time mom and my son is 9 weeks old. His name is Ryland. Hes everything to me and as he was growing I just felt as though something was not right with his eyes. The pedi told me everything looked normal and they didnt think anything of it but they referred me to a specialist to ease my mind. I took my son to an eye specialist at 5...
  • deleted_user

    Hi am new here

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    anyone willing to give me some info on bilateral onh with nastagmus. I have a granddaugther that is 3 months old and was just diagnosed. I have researched online but i would like to hear from other parents or individuals that are dealing with this. Scared about not knowing what my granddaughter will have to deal with and very sad that she will never see all the beautiful things in this world.