I Have Holt-oram Syndrome

A Holt-Oram Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Holt-Oram Syndrome. You're not alone. 19 People

    Holt Oram Syndrome

    I was born with Holt Oram Syndrome. It's something that's going to be with me my whole life. Not many people know what Holt Oram Syndrome so I often find myself explaining what it is. I have looked around for sites on the internet to perhaps meet someone else with Holt Oram...
    deleted deleted
    3 Responses Nov 18, 2008

    Birdie My Most Precious Gift From God

    Birdie came unexpected being told you are in menopause oops not. But what a blessing she is she is my little life saver had she not come we would of not known about my Breast Cancer so her being born with HOS has never been a problem for me. She was born with no radial bones or...
    Birdiesmomma Birdiesmomma
    41-45, F
    Feb 11, 2013

    34year Who Was Recently Give The Name Hos

    I created this page because I am 34yr old women who has only recently was given the name to something I have lived with my hole life. Well during this time I have been doing alot of thinking and it has gotten me to want to know more about this syndrome. So I came up with page in...
    foxxy218 foxxy218
    31-35, F
    2 Responses May 5, 2012

    Searching For a Friend Who Understands

    Hi my name is Amy and I am 33 years old and mother of 3. I was diagnosed with HOS 9 years ago when i was pregnant with my twins. Until that point I had never heard of it and had no idea why I was different from everyone else. I had an asd repair when i was 17 and i do not have...
    Snowwww Snowwww
    5 Responses Jul 14, 2009

    Hi Guys And Girls

    Hi, i'm Richard I'm 27, and have Holt Oram Syndrome, I have absent ulna's in both arms, and reconstructed thumbs which my index fingers were used, I live in Wales, and i'm new on here please come and say hi :-)
    Re84 Re84
    26-30, M
    3 Responses Sep 11, 2012

    HOS Support

    I'm 26 and have Holt Oram syndrome, a few months ago I decided to set up a support group as I couldn't find one to join.  The group is at: http://holt-oram.ning.com/ please join if you have HOS, there are 17 members at the moment but it's growing every day. Becca x
    bigfrillypants bigfrillypants
    Aug 18, 2009
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