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 not to be given a definite diagnosis. I have searched the net
for all the different types of overgrowth syndromes. The only one which I
feel describes her almost exactly is Sotos Syndrome, but the geneticist says
her face is too round for that and the tests proved negative. Our family is
part of a study into overgrowth but that might take years to get answers,
and in the meantime its just a matter of waiting.

This site, which used to be very good, is really quiet these days. I belong
to another group which although primarily for Sotos, caters for all types of
overgrowth because there are lots of similarities. At least it stops me
feeling so alone. I can let you have the address if you wish. It is very
busy on there and I pick up lots of ideas and information.

Its so good to hear from someone in the same position, please keep in touch.

Susan
Suffolk, UK


----- Original Message -----
From: "ellie_rbrts" <ellie_rbrts@...>
To: <UndiagnosedOvergrowthSyndromes@yahoogroups.com>
Sent: Monday, February 06, 2006 8:31 PM
Subject: [UndiagnosedOvergrowthSyndromes] 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
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>
>
>