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Old 01-11-2013, 06:55 PM   #1
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b bright
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Phelan-mcdermid syndrome?!

Has anyone heard of this? Apparently there are like less than a thousand cases (highest number I read was 600) in the world. My nephew was just diagnosed as case 601.... (not literally 601).... Anyways, I can't find much information about it online because its so rare. I mean, I found the symptoms and treatment etc...but where is the support??? Ones anyone know of a blog or anything?

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Old 01-11-2013, 08:22 PM   #2
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Re: Phelan-mcdermid syndrome?!

Why not join their support group? http://22q13.org/j15/index.php?option=com_content&view=article&id=53&It emid=28 You are going to get the best info from the families of theses kids.

Every kid is unique even in the same syndrome so when you talk with the parents be open minded know that your nephew may do better, the same or worse then a child with the same syndrome. If my son had everything in his genetic syndromes I wouldn't even be on this board because he wouldn't have survived the pregnancy.
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Old 01-12-2013, 05:17 AM   #3
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Quote:
Originally Posted by mekat
Why not join their support group? http://22q13.org/j15/index.php?option=com_content&view=article&id=53&It emid=28 You are going to get the best info from the families of theses kids.

Every kid is unique even in the same syndrome so when you talk with the parents be open minded know that your nephew may do better, the same or worse then a child with the same syndrome. If my son had everything in his genetic syndromes I wouldn't even be on this board because he wouldn't have survived the pregnancy.
I did join but so far I can't find any forums or chat or anything. It just signed me up for a newsletter.
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