Re: Incidence and epidemology of PSC?

[Guest guest]

Hi Penny,

apparently PSC is not as rare as they once thought. http://www..demon.co.uk/page45a.html is the website of a PSC-support group in the UK and a lot of interesting information is posted there. They say that most of us with PSC will die with PSC but not of it. I think you and will find the information printed there encouraging (I know I did)

Ian Cribb in western Canada - PSC 1989

Hi, asked me this morning how rare is PSC, He is interested to know how many others there may be in Australia with PSC, Any ideas how I would find out??Have had a quick look on the net and really there is not much at all posted from Australia.Any info would be great....ThanksPenny.Penny D (Australia)Mum of (17) UC 11/04, PSC 2/05 -- Ian Cribb

[Guest guest]

Hi Penny

There is an Australian and New Zealand group.

http://groups.google.com/group/PSC-ANZ

We are extremely low key with no too many members, 3 of us being New

Zealanders.

Do join and hopefully you will be able to catch up with some Aussies.

I do know there is one girl aged around 9 or 10 with PSC, whose Mum

is a member, but has not posted any messages for a very long time. I

will search my records is see if I can find her email address.

Best wishes , from the bottom of the world in New Zealand.

>

> Hi,

> asked me this morning how rare is PSC, He is interested to

know

> how many others there may be in Australia with PSC, Any ideas how

I

> would find out??

> Have had a quick look on the net and really there is not much at

all

> posted from Australia.

> Any info would be great....

> Thanks

> Penny.

>

> Penny D (Australia)

> Mum of (17) UC 11/04, PSC 2/05

>