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UndiagnosedOvergrowthSyndromes · Undiagnosed Overgrowth Syndromes
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Reply | Forward Message #505 of 809 |
hi

hello all my name is ellie and i have a little girl who is 6years old
and has undiagnosed overgroth syndrome she is 137cm tall and weighs 7
stone. We live in the uk and very little is known about UOS is there
anyone who could help or as anyone got a or know of a child with the
same thank you ellie
Mon Feb 6, 2006 8:31 pm

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ellie_rbrts
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Forward 		Message #505 of 809 |
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my name is jan ferguson and my son jeremy was dx with soto for 2 years and now that they have done the gene test it is undx overgrowth syndrome. yesterday they... 		JAN
jan4bri
Offline Send Email 		Dec 18, 2003
7:52 pm

Hi Jan does this mean that because the NSD1 test came back neg they are now saying he does not havbe Sotos? Because I understood that this test was not...
finnedward1998
Offline Send Email 		Dec 20, 2003
9:38 am

hello all my name is ellie and i have a little girl who is 6years old and has undiagnosed overgroth syndrome she is 137cm tall and weighs 7 stone. We live in...
ellie_rbrts
Offline Send Email 		Feb 6, 2006
8:31 pm

Hi ellie - my little son is nearly 6 and is your daughter's height, and 32 kgs (not sure what in stones). The hardest part for me (and him of course) is other...
dlp
donnaleapau
Offline Send Email 		Feb 7, 2006
2:10 am

hi donna thank you for your email it is worring and hard for both, its so not fair. people think my daughter is around 10 to 12 years as she is the same...
ellie roberts
ellie_rbrts
Offline Send Email 		Feb 8, 2006
2:00 pm

Hi Ellie I am also in the UK and my daughter Shannon is 8 and has a diagnosis of Unrecognised Overgrowth Syndrome and Asperger Syndrome. It is so frustrating...
susan smith
shannick145
Offline Send Email 		Feb 7, 2006
11:30 am
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