--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "shannick145"
<shannick@...> wrote:
>
> I have had difficulty getting into this site recently and wonder
> whether anyone else has too.
>
> Anyway, I have just browsed through the membership list and
realise
> that there are several new (genuine) members who have joined in
the
> past few months, but have not posted on here, maybe because it is
> fairly quiet. This site used to be really busy and informative
and
> I would like to see it get like that again.
>
> I am sure I am not the only member who gets so frustrated about my
> daughter not having a proper diagnosis. My doctor said that there
> are more people who have an undiagnosed overgrowth condition than
> there are with a named syndrome. It is likely that we will never
> get to the bottom of what our kids have wrong with them, but it is
> my dream that one day on here, two members will realise that their
> children have exactly the same features and a new syndrome will be
> born.
>
> If anyone is interested, I would be happy to give a lengthy
account
> of all my daughter's symptoms, features and history, and would be
> very interested in any information which anyone else would like to
> pass on about their child.
>
> Please let me know if you are interested.
>
> Susan UK
>hi susan,everything on here seems fine,hows shannon doing ,i hope
well,im seeing the genetist 2 morrow,ill let you know how it
goes,maxine