Hi Liz,

Just curious where you are from?  We live in the USA, and my son is 5 years old and has Sotos Syndrome.  He gets services and funding based on the diagnosis.  I believe it is classified as a disability.  Like most things it probably is based on the functionality of the person vs. the genetics/medical side of it.  Have you ever tried posting to the Sotos group at:   

Sotosyndrome@yahoogroups.com ?  There is a yahoo website for Sotos Syndrome.  A lot of parents of Sotos children are members, but there are some members who have Sotos as well.  Might be a place for you to meet others and get some info!    

Take  care,

Pam J

(Mom to Kevin age 5 Sotos-like)

-----Original Message-----
From: liztombs [mailto:liztombs@...]
Sent: Monday, January 03, 2005 12:33 PM
To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
Subject: [UndiagnosedOvergrowthSyndromes] i have sotos syndrome

hi my name is liz tombs, and i have sotos syndrome, and ive had it for the past 27 yrs,
and it can some times be a pain in the but,
if there are any other people on this page who have this syndrome,
one thing is that slightly anoys me is that this syndrome isnt classed as a recognised
syndrome or disability,
and i was wondering if it is classed as a disability,