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All Tags » children with albinism (RSS)
  • Any good PO recommendations for Washington D.C./Maryland/Virginia area??

    I may have to switch due to insurance carrier change, I want to make sure I take my son to someone with experience in Albinism/Nystagmus. Any recommendations would be great even if I have to drive a bit. I'm sure I will try to see Dr. Hertle at some point in the next year as well. Thanks! -Jessie
    Posted to Forum by Colinsmommy on 11-11-2009
  • I don't know where to begin... my son was just diagnosed.

    Hello everyone, first want to thank you all for taking the time to post all the useful information on this forum. It has really helped me transition to this new Albinism world! My 3 1/2 month old son Colin was just diagnosed Friday with Ocular Albinism, possibly X chromosome type as well as Nystagmus...
    Posted to Forum by Colinsmommy on 11-08-2009
  • glasses

    hi there,im new to the site,i have a 2 1/2 year old boy with albinism and have problems finding dark glasses can anybody help me please
    Posted to Forum by trisha hafiz on 06-10-2009
  • Re: Eye contact

    My son is 3 months old and has only made eye contact ONCE. I brought him to an ophthalmologist yesterday because his eyes are constantly 'roving' as well as having a jerky nystagmus. That is when he was diagnosed with albinism. The doctor couldn't comment on his vision yet (other than that...
    Posted to Forum by ShmeinaK on 12-25-2008
  • A Few Quick Questions.

    Hey everyone! I'm a sophomore in high school and I'm taking health this year. We have a term paper and oral presentation to do, and I am doing mine on albinism. Now, I know there's plently of great information on here about albinism, but I find it a little more interesting hearing from people...
    Posted to Forum by Mello on 10-06-2008
  • Lyra the Songster

    I post a lot of videos of Lyra. I do this not just to entertain, but also to support my overall purpose of starting this site. I’m not sure if they really HELP other parents of children with albinism.?? I hope that for NEW parents of a child with albinism, watching these videos gives [...]
    Posted to Weblog by Anonymous on 09-26-2008
  • New Pictures

    Over the last couple of weeks I’ve been borrowing a friend’s Sony Digital SLR camera. It’s AMAZING how easy it is to take good pictures when you have a good camera. It’s been so much fun! I’ve been taking pictures like crazy. Lyra really knows how to ham it up for the camera...
    Posted to Weblog by Anonymous on 08-31-2008
  • Vision Update - 2 years 3 months

    Lyra had an appointment with her pediatric ophthalmologist this month, a check-up that was originally scheduled for the end of September. Several weeks ago, we lost one of the lenses from Lyra’s glasses. After over a week of searching, I gave up. We knew we had to get her a new pair. I didn’t...
    Posted to Weblog by Anonymous on 08-31-2008
  • Resources

    Albinism Information NOAH (The National Organization for Albinism and Hypopigmentation)- An organization where people with albinism, their families and those that work with them can get information, ask questions and share their experiences. Albinism International- An online support community for people...
    Posted to Weblog by Anonymous on 08-15-2008
  • New PO

    Hey, everbody! I have an appointment for Jathan with his new PO on August 9th. Does anybody have any suggestions on what questions I shoud ask or what I should look for? The first PO that I went to was horrible and left me crying for weeks. He was so negative and didn't answer any of the questions...
    Posted to Forum by Jathan on 07-30-2008
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