One of the hardest aspects of dealing with PSC is that it is so unpredictable and affects different people in different ways. Access to high quality resources about PSC is invaluable, but sometimes simply reading about what happens in real life to real people helps more. 

Here's a selection of insights into all aspects of life with PSC. We are always looking for people to tell their personal stories. Please get in touch! 

Share your own story


Click on the Categories to choose a topic

Brain fog

15 February 2019
What does brain fog feel like? Here is how people with PSC describe it.

Alan's transplant

Alan received his new liver in May 2005 at St. James's, Leeds. He was then 65 and has been doing well. This is a personal account by his wife, Judy.

A liver for Gary

Gary lived with PSC + AIH for 8 years before he was added to the transplant list in November 2016.

Andy S - transplant

​Diagnosed with PSC as a young teenager, Andy needed a liver transplant some thirty years later.

Angela

"Many members are in the early stages of PSC, some perhaps in more advanced stages but whatever your situation be not too alarmed!  Apprehension and fear of the unknown play havoc with us all.

Annette

I had a liver transplant five weeks ago (at the time of writing), everything went well and I feel great. In this article I want to share my experience, especially concerning the decision to have a transplant and the timing of it.

Ben

“The first symptoms that I had for PSC came out of the blue really. A few years prior to this, I was diagnosed with inflammatory bowel disease (IBD) and was on medications that were managing the symptoms of this. 

Clare

I was diagnosed with PSC in 2006 and received my transplant in March 2014 and this year I took park in my second British Transplant Games.

Craig

This is a great story about Craig's liver transplant featured in Pick Me Up magazine. 

David

You look at life differently after suffering from a chronic disease and getting a life-saving transplant.

Emma

Emma Hopley planned to get married to Dave Amison on December 30 2015. Unfortunately, following a prolonged stay in hospital and deterioration of her condition, Emma and Dave were forced to cancel their wedding. Instead, they were married on 27 December 2015 in the Queen Elizabeth Hospital, Birmingham.

ERCP

With thanks to Michael for sharing his experiences of ERCP. When you have PSC your life seems to be taken over by letters! ERCP, MRCP, LFTs, MRIs and a lot more. 

Ewan - London to Brighton Bike Ride

The London To Brighton (L2B) bike ride is 54 miles from Clapham Common in London to the Brighton marina, cycling on fairly quiet roads through the Sussex countryside.

​Father and son talking about living donor liver transplant

Sam and Martin talk about PSC, having a liver transplant and living donor liver transplant, what life was like on the waiting list for a transplant, the reality of liver transplant, and what life is like after transplant.

Fatigue

​What does fatigue feel like? Fatigue is one of the most commonly reported symptoms in PSC, and here is how people with PSC describe it.

Gary: family life with PSC

Gary talks about the impact of PSC on his family life and talking to his children about transplant.

Gary: PSC diagnosis in 2008

Gary talks about being diagnosed with PSC and Autoimmune Hepatitis in 2008 and what he was told at diagnosis.

Gary talks about needing a liver transplant in 2017

Gary talks about life on the waiting list for a liver transplant and how liver transplant has changed his life.

Ian

2006 really was a tough year in which I spent a lot of time either in hospital or attending hospital for various reasons. It was certainly very difficult also for my family and especially my wife and children.

James - London to Brighton Bike Ride

"Living in Brighton, you see a lot of London to Brighton events. However, when PSC Support asked for a team of riders to be involved in this, I jumped at the chance. I have always enjoyed riding and last year started to cycle to work once a week, so I was hoping I would be fit enough for this event.

PSC Support (registered charity number 1175427). We use cookies to improve your experience using this website. To learn more, read our privacy policy.
Log in | Powered by White Fuse