Re: Barb (in Texas) and PSC-Support UK

[Guest guest]

Thanks for that recommendation for our newsletter, Barb. I'm still blushing!

For those who don't know - I run the PSC-Support group in the UK. We have around 300 members, including 25 from overseas, mostly from the US. We find it difficult to break through the 300 mark. Although on the basis of the view that the incidence of PSC in the general population is 100 per million there would be about 6000 pscers in the UK. Maybe 30,000 in the US? So we think there is every possibility of expanding and we always welcome new members.

We publish a tri-annual newsletter - "PSC-News" in which we try to update developments

and we also have an annual meeting in Oxford where Dr. Chapman, one of the 3 or 4 top PSC specialists, talks about latest developments and gives us a Q and A. session.

He advises us and more recently I've been sending Aubrey medical articles for checking.

Obviously most overseas members are not going to get to Oxford so we include any important developments which come out of the meeting, in our next newsletter. We also put it on our website;

www..demon.co.uk

I also post you any interesting information that comes our way in return for all the useful stuff we get from you. So if anybody would like to join us - the sub is $20, the address;

PSC-Support

39 Belvoir Road

London SE22 OQY

UK

Contact numbers:

Tel/Fax 0044 20 8693 8789

0044 20 8637 0592

email: pscsupport@...

We don't have a message line like you for two reasons. We find that a significant number of our members are still not computer literate and most of the Brits will not hang it all out as some of you do. Many are still very reticent to talk about their medical condition in public. Especially the men. We don't hear about many women being in denial do we? And I notice that it's strange that - considering pscers are two thirds male - most of the contributors are female!!

And another thing - Barb - your posting on Actigall and Urso. I'm a lurker on the information and message line for one of the biggest PBC groups in the US. They also take Urso. It's quite common for their members to report problems with Actigall. When they change to Urso they find - for whatever reasons - that their problem seems to disappear.

Ivor