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  • Conference Advice

    Hi, We have fraternal twin girls that are 4 months old this week. One of our girls was diagnosed with OA at 2 months. We are struggling with the decision to make the trip to the conference. We live in Los Angeles and we're not sure if my husband can go because of work and we are debating the benefits...
    Posted to Forum by shainashapiro on 06-14-2010
  • Advice on Sunglasses

    Hi everyone! I'm 19 and I love being outside and traveling whenever I can, and recently I've come to realization that my cheap-o plastic-framed sunglasses just aren't cutting it anymore. My older brother (who is no visually impaired) recently purchased some very nice Costa Del Mar sunglasses...
    Posted to Forum by Danielle on 04-27-2010
  • Our first PO visit

    It went very well today. Andrew wasn't fussy at all which helped so much since everything took so long. She confirmed what the eye doc said about him having Ocular Albinism. She said his right eye is 2.75 and his left is 4.75 and he is far-sighted but she doesn't want to prescribe him glasses...
    Posted to Forum by tabi on 01-18-2010
  • researching for writing a fictional character

    hello. my name is raven (yes, like the bird), and i write fiction. i decided to join this forum because one of the characters i have been working with for some time now happens to have albinism. i am still trying to work out exactly which sort of albinism the character suffers from, but in the meantime...
    Posted to Forum by MaryHoliday on 12-27-2009
  • Ocular Albinism and Pain

    My friend has a son with ocular albinism. He recently started experiencing unrelenting, severe pain up and down his spine and basically he is in chronic pain. He has AHP (abnormal head posture), strabismus. She cannot get any local doctors to take her/him seriously, and two doctors have offered the opinion...
    Posted to Forum by littlelaura on 11-25-2009
  • Re: 20/20 Special: Overcoming Social Stigma of Albinism (What Are Your Thoughts)

    The 20/20 special was very well done. But I would not have put so much emphasis on entertainers being the only example of albinos being successful. Most of us don't end up as entertainers. I was also sad for the young lady who felt the need to cover her albinism. I do remember the teenage angst but...
    Posted to Forum by Holly Hansen on 10-03-2009
  • Re: Ausie Daughter 7yrs OCA1A Advice on any new Tech-Stem Cells/Contacts etc-Australia too Small

    Lisa and all, There has been a lot of talk about Stem Cell Transplants recently. A lot of parents from the United States and around the world taking their their children whom are totally blind or Visually Impaired or have other disabilities for Stem Cell transplants. Keep in mind these doctors in China...
    Posted to Forum by JessicaTraskReagan on 06-11-2009
  • Re: Ausie Daughter 7yrs OCA1A Advice on any new Tech-Stem Cells/Contacts etc-Australia too Small

    Lisa, It's not possible the your daughter has just Ocular Albinsim because 80% cases of Ocluar Albinism which the gene is on the X Chromsome which means it's X-linked which also means the a female is a carrier anc can only have a son with Ocular Albinism. Chances are your daughter most likely...
    Posted to Forum by JessicaTraskReagan on 06-07-2009
  • OA with seizures

    I don't really know where to start here my son was diagnosed with ocular albinism at the age of 2months. We were referred to the childrens hospital in Kansas City, Missouri to a doctor who specialized in pediatric opthamology. However after having this doctor treat our son for 3 years we decided...
    Posted to Forum by Cara Judd on 05-01-2009
  • Married to Person with Albinism

    Hi, I've just joined the forum and I didnt see any specific place for people married to someone with albinism. I could really use some advice and guidance as my husband (of 8 months) is very senstive about the subject and will not discuss it. Yet it always comes up, and sometimes affects our marriage...
    Posted to Forum by Zouzette on 03-23-2009
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