Prader-Willi Syndrome Support Group

Prader-Willi Syndrome (PWS) is a genetic disorder in which seven genes (or some subset thereof) on chromosome 15 are missing or unexpressed (chromosome 15q partial deletion). PWS is characterized by hyperphagia and food preoccupations, as well as small stature and mental retardation. In 2000, the US FDA approved the use of growth hormone treatment for treating symptoms related to PWS. It appears that HGH has some positive effects in reducing both the hypotonia and hyperphagia (excessive eating) aspects of the disease. PWS is identified in approximately one in 25,000 births.3 Because many affected persons are not diagnosed at an early age, this statistic is likely an underestimate. More realistic estimates of PWS prevalence range from one...

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  • layton

    Support group for person with PWS

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    Is there support groups for people with PWS? I have it.
  • kim01

    6 year old daugther with pws

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    ok guys i am looking for support we adopted our duaghter almost 19 months ago. we started fostering her baby sister and ended up adopting her and then got E, who we also adopted. she has many issues from iq to behavior, she picks skin, lies, steals food of all kinds. even takes stuff from the trash, will take stuff from the grocery bags and eat as i'm driving. i have 3 rows and have to drive. so...
  • deleted_user

    dealing with pws

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    on may 28 2012 , my doctor told my mother and I , my son has pws and i took it hard. i didnt understand what that meant. i never heard of it before. at first they didnt know what was wrong , he didnt cry and didnt have a sucking reflex , and right away he was in intesive care for a month. in that month the doctors said they suspected he has water in his brain and he might not live to even sit up....
  • deleted_user

    Do people with Prader willi...

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    have to be mentally retarded???? I've seen shows and read articles on this but I usually see that they are metally retarded. My daughter's psychiatrist is suggesting that this may be a possible diagnosis for her so we're researching it. However, she is not academically delayed at all. She is actually gifted. She does however show the other symptoms....
  • deleted_user

    Fostering a child with PWS with children of my own

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    Hello, I am new to the forum and and found you outy as I need some really sound advice. Basically my two little cousins were taken into care a year ago they are 4 years old and 22 months old. There is no one in the family to take them and we are the only ones who have come forward. However, in the last couple of weeks I have been told that the little one is undergoing tests for PWS.Her symptoms...
  • deleted_user

    really needs someone to talk to

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    I am 18 and i think i may have pws. for as long as i can remember everytime i will eat a meal i would never feel full. even now i notice it. and another thing is i eat when i am bored i eat when i am tired i eat when im sad and i even eat bc i see it is there. now that i am having all these medical problems with me starting to appear i still cant stop eating when bored or tired etc. and it makes...
  • deleted_user

    new member

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    hi I am the Mother of 4 and foster Mother to another four My 37 year old has pws We have been through a lot with her and her health isnt as good as it good be, Diabetes 2, high blood pressure, and of course weight problems. She has a low IQ (70) but manages to work in an office of a business that looks after disabled adults. She answers the phone, does filing and photocopying.Would love to...
  • deleted_user

    help with prader willi syndrome

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    Hello i am a freshman in college and i need some major help! i have always had problems with food and my weight. but now that i am in college it seems that more medical problems have been happening to me and it scares me. my problem with food is i never feel full. and bc of that i keep eating. i dont know what to do and i am scared... i need some help and some advise!
  • deleted_user

    infant with insatiable appetite

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    my son is 23 months with global DDhe has been tested negative for pwshe has no diagnosis other than low muscle tonemostly he is doing well now after a tough first year and a halfim told that his milestone times are similar to that of children with DS however, our one big issue is surrounding food......he is rarely satiatedwhen he is in a room where there is food he immediately turns all his...