Williams Syndrome Support Group

Williams syndrome is a rare genetic disorder characterized by a distinctive, "elfin" facial appearance, an unusually cheerful demeanor, ease with strangers, a love for music, and cardiovascular problems. Persons with Williams syndrome generally possess very good social skills, to the point that this condition is sometimes called "cocktail party syndrome." This group can offer you the support you need if you or a loved one suffers from this syndrome.

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  • Hi All,Has anyone tried stem cell therapy to improve feeding issues, overall developmental milestones?Thanks,Annit
  • come meet me a girll with WS!
  • positivity20

    more independence

    I have a cousin who just turned 21y/o and she has voiced to me, the need for more independence. She is frustrated at being treated different all the time and just wants to be able to go out and try new things. She just started reaching out to me within the last month. It breaks my heart b/c she tells me this. In addition, I spoke with her yesterday and she informed me she did nothing all day but...
  • hi!I suffer from WS and was wondering if i could talk to somebody else or help somebody who has the condition !it has affected me in many was and as its a rare disorder id love to speak to somebody
  • Has anyone had this happen with their child? My little grandson carries on a conversation with himself. It is a little strange. There isn't place where we can get information on what is normal for Williams and what is not. There is just so much we don't know. He is six.
  • I am a grandmother of a 6 year old with possible Williams Syndrome. He is undergoing testing. He has all the symptoms and now he is having seizures. He had them as an infant - very small - and they soon disappeared. Now they are returning. Anyone experience this? I told my daugher to have him tested for Hypercalcemia. Any advice would be appreciated. I am so worried for him. He has had health...
  • deleted_user

    Reaching out

    The following is an e-mail I sent to info [at] williams-syndrome.org:I am posting this because I am an adult with strong reason to believe that Williams Syndrome is more common than diagnosed, like the Age of Autism. TED Talks like this http://www.ted.com/talks/juan_enriquez_will_our_kids_be_a_different_species.html have inspired me. What is more, many of my physiological symptoms have begun to...
  • I am looking for any other parents out there with a teen w/ W.S. that attends public school that would like to share their experiences with me and my son . The teen years are hard and more complicated - Just unsure of every decision I am making . Any one else out there can relate ?????
  • We have a 6 year old girl with WS and she has two younger brothers (5year and 5month) and everything she does "bad or naughty" always comes back to..."Because my brothers made me."(and i get the two older kids are very close but half the time our 5 year old isnt even around the situation she tries to put on him) It gets very challenging because we are at a loss as to how to explain that your...
  • Hi there,My partner and I care for her sister after their father died 18 months ago. We would love to hear from anyone who is in a similar situtation caring for a Williams syndrome adult. We are gettgin there but would love to talk with anyone who has experience to share!!!Beth
  • deleted_user

    Whats Next?

    We have been in the hospital over a month with one of my 2 month old twins. After 4 surgurys, now they are saying there is a large possibility that he has Williams Syndrome. We are doing a CT tomorrow to look at his aorta because they think its too short. What am I supposed to do now? He already has a trach because he has a narrow airway and a feeding tube because he was "failing to thrive". How...
  • Hey! I just joined the group. My child is 22 months old and was diagnosed at 15 months because of high calcium and kidney problems. He goes to PT, OT, and ST twice a week.. He is still not walking. When did your children start walking? He is very frustrated. I stay home with lane so he does not play with a lot of children. From experiece do you guys think he needs to spend time with other...
  • My 14 year old daughter was diagnosed with Williams Syndrome 10 years ago. Her FISH test came back negative, but the drs thought she had enough other symptoms to merit the diagnosis. We have struggled to understand her condition because, while she does have some of the typical characteristics, she does not have others. She did have a hernia as a baby, and she has always been of small stature,...
  • I just discovered Williams Syndrome and it seems to fit together most of my daughter's collection of genetic abnormalities and described a few of her characteristics I would never have considered "symptoms."The web sites where I read they symptoms are:http://www.williams-syndrome.org/what-is-williams-syndromehttp://parentingspecialneeds.org/article/342My daughter's possibly correlating...
  • deleted_user

    books om WS

    So I am so totally new to this world of WS. My baby has just been diagnosed and I am looking for any and all reliable information and literature. Does anyone kno of any helpful books? Or even anything else that I might find helpful?