hi carole. glad you found the info, that can be most useful. Are you
on about wendy hughes' book? i have not actually read it bt can highly
recommend it and i would also read her second one - ten years on.
Although one thing i would say is that everyone gets Stickler Syndrome
differently. If you met me you would not really think I had it as it
does not affect me ar largely as some people. I had glasses especially
made for me at the tender age of one so it can be done if you go to
the right places. I take it you are in the UK then? You can join the
SSSG for a little fee a year, they have annual conferences too which
can be most helpful as you can hear stories from other adults and can
be referred to specialists.
For example there is currently a study ongoing in the UK in
Addenbrookes Hospital in Cambridge and there is a specialist there to
do with the eyes which most people I know with SS have seen. He is
truly amazing!
Anyways feel free to e-mail me with any questions or anything.

Thanks
Amy

--- In sticklersyndrome@yahoogroups.com, carole pilgrim
<sillypilly51@...> wrote:
>
> Hi
>
> How good is it to have someone to chat to in the UK about SS as most
people I have found are from Aus or USA and their way of treating
people id so different.
> I have found a site that I printed loads from but I was going to buy
the book on SS have you read it or even heard about it I think its
from the site you mentioned.
> We are in the early stages of stickler so I am not sure what to
expect as everyone is so different, I no that my son is very short
sighted and needs glasses now but I have been told he is to young for
them (just 7 months). I have read that a baby in the US was given a
contact lens but I guess that the UK is not that far advanced in
Sticklers as these places seem to have far more people with the syndrom.
> Anyway thanks for taking the time to mail me back I think I could
learn lots from you as you are old hat at SS and as you said the docs
seem to no very little about it and expect us to help them.
>
> Thanks again
>
> Carole
>
>
> ----- Original Message ----
> From: Amy <amwshamws@...>
> To: sticklersyndrome@yahoogroups.com
> Sent: Friday, October 27, 2006 6:19:08 PM
> Subject: [Stickler Syndrome ] Re: New and looking for support
>
> --- In sticklersyndrome@ yahoogroups. com, "carole" <sillypilly51@ ...>
> wrote:
> >
> > Hi I have a 5 month old little boy who has been dignosed with
stickler
> > syndrome.
> > I have been told that it runs in his fathers side of the family but I
> > have very little to do with them so I am trying to find ouy more
about
> > this syndrome from the internet. If antone knows of any good sites
> > please e-mail them to me as all the helpI can get would be welcome.
> >
> > thanks
> >
>
> Hi Carole I am Amy, the best thing I would suggest is just use some
> good search engines and put Stickler syndrome in and you should have
> lots of sites come up. the one I use most here in the UK is
> www.stickler. org.uk
>
> This site also has lots of fact sheets you can print out to give to
> doctors or teachers when the time comes as I often find I know more
> about the condition than most of my doctors and they have found the
> sheets most useful.
> If you have any mre question feel free to email me to chat.
>
> Amy
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>