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