Primary sclerosing cholangitis

[Duddles]

My wife aged 72, has just been diagnosed with PSC, of which we know little. I would be very grateful if someone could point us to the area on Health Unlocked which could help us,. or any experiences or tips from anyone who has knowledge of the disease.

We do not know yet at what stage the disease is, we are hoping it is early days. but don't know as yet.

Thanks for any help you can give us.

[Kristian]

Welcome to the PSC club. For general info the PSC Support UK website is very good, they also have a Facebook group which is good also a good source of info.

I know BLT prefer us not to post links to external sites but I can vouch for the psc support uk site as being reputable. This is the link to their Facebook page:

facebook.com/groups/pscsupp...

And to their Web page:

pscsupport.org.uk/

When I was first diagnosed. It was a bleak picture. However, as more info and research has progressed, the outlook for those diagnosed has become a little less gloomy. So, just be careful if you do an Internet search as a lot of the data on there is now quite out of date. A lot of the earlier studies were done in specialist centres that only saw the late ends of the disease. So that tended to skew the outcomes somewhat.

There is still no cure, but there is now much more known about it and prognosis is not quite as bleak as it was once reported. Living with the disease for 20 plus years now seems more common.

Of course it's a progressive disease and does have its impacts. But those will be monitored and managed in the same way other liver diseases are.

Always feel free to ask any questions that you may have, or if you are unsure of anything. I'll always be happy to share with you any experience I've had to help offer a bit of reassurance where I can.

Good luck to you both.

[Duddles in reply to Kristian]

Thanks Kristian - that is a good start - initial searches on the Internet produced some disturbing and worrying information and our first couple of days have been a bit overwhelming. Your post lightens the mood a bit. We are still largely in the dark so your post is a great help.

[BritishLiverTrust8 Moderator British Liver Trust]

Dear Duddles

In addition to the suggestions from members of the forum, here is the link to information about primary sclerosing cholangitis on our website, which you may find useful:

britishlivertrust.org.uk/in...

Here is a link to some information on our website about preparing for appointments, including questions to ask your doctor, which you may find helpful:

britishlivertrust.org.uk/in...

Best wishes

British Liver Trust

[Duddles in reply to BritishLiverTrust8]

Thanks so much - lots to learn and digest.....