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*Study of Mowat-Wilson syndrome

 
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mwilson
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Joined: 06 Dec 2005
Posts: 39

PostPosted: Tue Dec 06, 2005 9:24 am    Post subject: *Study of Mowat-Wilson syndrome Reply with quote

My name is Liz Evans and I am a PhD research student at the University of New South Wales, Australia. I have conducted a study of the behavioral/emotional aspects and development of individuals with Mowat-Wilson syndrome (MWS) confirmed by gene testing. Parents, doctors, teachers and psychologists need information regarding the behavioral and developmental aspects of MWS to be able to best help individuals with this condition. This project was intended to provide such information. My supervisors for this project were Professor Stewart Einfeld and Dr. David Mowat. Dr. Meredith Wilson was also an associate investigator on this project. Children and adults of any age who have MWS were able to participate in this project, along with their parents or guardians. I wish to thank all the participants in this research study that filled out questionnaires, and am thankful for having the opportunity to meet many people with MWS to assess their abilities and to interview their families. If you want more information about this study, then please send me your name, contact details, and I would be happy to share any information I can. You can email me at this address: <heresliz@optusnet.com.au> or write to me at: Liz Evans Ground Floor, 2 Short St. Kogarah NSW 2217 Australia. Thank you very much. Yours sincerely, Liz Evans.

Last edited by mwilson on Tue Dec 06, 2005 8:18 pm; edited 1 time in total
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mwilson
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Joined: 06 Dec 2005
Posts: 39

PostPosted: Tue Dec 06, 2005 9:27 am    Post subject: Study of Mowat-wilson Syndrome Reply with quote

Our son has suspected MWS. Patrick is 10 years old - we are waiting to see genetisists at St George Hospital Sydney. From what I have read it is very likely but it would be great to have a definate diagnosis after all these years!
cullendw@dodo.com.au
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mwilson
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Joined: 06 Dec 2005
Posts: 39

PostPosted: Tue Dec 06, 2005 9:28 am    Post subject: Reply with quote

Hi, my son, Ryan, has Mowat Wilson Syndrome and is almost 6 years old. He went to a wonderful pre-school setting for special needs children and is now in a Special School. He loves it and because of the small class size he is now very confident, has made friends and identifies with the group. I wouldn't consider mainstream for him and I looked into all options very carefully. Hope this helps, would be happy to discuss this further. Sarah
Sarah, Cheltenham
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mwilson
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Joined: 06 Dec 2005
Posts: 39

PostPosted: Tue Dec 06, 2005 9:31 am    Post subject: MWS Study Reply with quote

My nephew is currently being tested for this disorder. He--and many of my husband's family--has Waardenberg (sp?) syndrome. My nephew has kidney and digestive dysfunction, facial deformity, and possible autism. The rest of the family has various pigmentation anomilies and degrees of hearing loss. Finding information about these things is difficult. So far, no signs of either condition in my five-year-old son.
Michelle Fox
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Dave C



Joined: 06 Dec 2005
Posts: 8
Location: Nevada U.S.A.

PostPosted: Tue Dec 06, 2005 8:11 pm    Post subject: MWS Study Reply with quote

Where is he having the testing done? Shaw Waardenburg Syndrome has many of the same symptoms as MWS, but I haven't heard of any links to autism.
Dave
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PostPosted: Sat Dec 24, 2005 5:01 pm    Post subject: Reply with quote

Hi my daughter Lauren was finally diagnosed last year at 14 yrs. old, however, at birth she was given Waardenberg Syndrome for her diagnosis for lack of any other knowledge. She did not have a white forlock or pigmentation problems but she was diagnosed deaf, however, she is now a hearing child. Who knows I am just soooo happy she has been diagnosed and if it wasnt for my research and diagnosing through Dr. Mowat she would still be undiagnosed now!!
Gotta go, be back later.
Joan, NY.........Lauren 15.........Chris 23........Melissa 19
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elonga



Joined: 15 Oct 2007
Posts: 1
Location: France - Doubs (25)

PostPosted: Fri Oct 19, 2007 9:44 pm    Post subject: Mowat-Wilson Syndrome in France Reply with quote

Hello Liz,

I just see you request on MWS forum posted in 2005 for your research.
http://mowatwilson.org/phpBB2/viewtopic.php?t=2

My soon born is 2.5 years-old. He has Mowat Wilson Syndrome.
We live in France and would like to know better about Mowat Wilson Syndrome.
Because we don't know what is better to develop this child.
Some professionnals deal with him but they don't know this syndrome.
Could you help us to dothe best for this lovely child.

Michel
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