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klipper trenauney-weber syndrome.

6 replies

mckenzie · 06/10/2004 21:33

My friend's new baby who I posted about the other day has now been diagnosed and has this syndrome. Her consultant said it's the first time he's seen a case ever in his 32 years of practice so it is obviously quite rare.
Just wandered if anyone on Mumsnet has any experience of it?

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mckenzie · 06/10/2004 21:37

sorry, should be Klippel-Trenaunay

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mckenzie · 06/10/2004 21:40

sorry again, should be Klippel-Trenaunay-Weber in fact. The internet is as always being very informative but it woudl be great to 'speak' with someone who has personal experience.

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mckenzie · 07/10/2004 16:29

bump

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suedonim · 07/10/2004 17:15

The NCT has an Experience Register and may have someone who can offer support - call them on 0870 444 8707. Or there's Cafamily who put parents of children with health problems in touch with each other. Hth.

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mckenzie · 08/10/2004 09:11

thanks Suedonim.

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sleeplessmumof2 · 15/10/2004 13:09

really recommend CAF contact a family a great organisation that offers wonderful support,

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