on the internet for information about Treacher Collins Syndrome I found
very little non-technical / clinical information, and even less information
from a personal point of view. Most sites I did find were of support groups
and most were in the US.
When I was born
with TCS I expect my parents would have appreciated a little more information
and advice. I don't think they got much support at all. In fact I think
they were faced with many blank looks from people who weren't quite sure
what to make of me!
As I have now
started my own homepage I thought I would try to compile some information
and gather some links that might be of use to people with TCS or their
families. I hope it may also be used as a meeting point for those people
(Until very recently I had never spoken to anyone with TCS), and also help
those who are lucky enough to live without it understand a little more
about it. It is amazing how most people are afraid to ask!
I would appreciate
it if you would sign the guestbook, which can be found in the utilities page,
especially if you have TCS or have a family member with it. Please give me feedback
on where you are from, how (if at all) you are connected with TCS, how useful you
found the site and any suggestions for improvements. Also if you have any further
information or links which could be added, please let
I have included a "What's New" page for
the convenience of frequent visitors.