Optic Nerve Hypoplasia

  1. Hi everyone,

    Is there anyone out there that is familiar with this problem? I'm aware the patient is unable to see and may have some gait problems.

    Does anybody know of someone with this terrible disorder and what are they doing about it

    Any info would be reatly appreciated! Thanks in advance for any reply.

    Sharona
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  2. 5 Comments

  3. by   daisey_may
    I am not familiar with this disorder, but when I went to research it a bit, I found that optic nerve hypoplasia (aka septo-optic dysplasia or deMorsier's syndrome) is the underdevelopment of the optic nerve during pregnancy. It usually happens bilaterally more commonly than unilaterally and it is not progressive, inherited or curable. It is also one of the three most common visual impairments in children.

    Here are some websites that talk about current research. There are references that you might be able to look into as well.

    http://www.blindbabies.org/factsheet_onh.htm
    http://www.onesmallvoicefoundation.org/whatisonh.html
    http://www.lowvision.org/optic_nerve_hypoplasia.htm
  4. by   sharona97
    Love your picture! I studied it too, was hoping to find a great research project going on as we just found out our great-nephew was born with this. Thank you for your websites.
  5. by   daisey_may
    I'm sorry I wasn't able to help you more. I hope that you will be able to find information that will help you. From what little I did find, my heart goes out to you and your family. :icon_hug:

    God bless,
    Daphne
  6. by   AZ hopeful
    ONH is common in albinism ..........
    removed the rest of post as sharona97 responded-

    to sharona, youre welcome and I wish Cameron every success- awesome family, not sure if I can sign the petition as not US resident
    Last edit by AZ hopeful on Oct 3, '07
  7. by   sharona97
    We just found found out our great nephew has ONH. He returned from a study in China and is seeing and doing much better. Google www.CameronsMiracle of Sight.com and there is a web site of there experience. I was trying to find out if there is any research in the US that the may not have explored. Thank you very much for the reply. Many Blessings to you and your family.

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