I was diagnosed with PSC whilst living in Singapore in February 2007.  I had been given a grim prognosis in Singapore, so felt very worried and uncertain about what the future held for me, my husband and one year old daughter.

I was told I was the only person in Singapore with PSC !  We decided to return to the UK where there is a greater awareness of PSC.  I found the PSC SUPPORT web-site, and discovered that the 2007 Annual PSC SUPPORT meeting was being held just after my return to the UK.

I’d been feeling isolated, so was determined to make it to the meeting, even though this meant an early start, and a long drive on my own.  I didn’t know what to expect, or what the people attending would be like, but I felt reassured by a friendly e-mail from Ivor.  I’m so glad I didn’t let the terrible flooding that weekend put me off.

I grabbed a coffee when I arrived, and slightly nervously made my way over to a large group of people who, I hoped, would be part of the PSC group ~ they were !  The first thing that struck me was how friendly and welcoming they were.  There were people of all ages and backgrounds, some of whom had travelled a long way just to attend.

This was the first time that I had ever met another person with PSC, and been able to chat about how it feels to be newly diagnosed, treatments, research we’d read, doctors, other people’s reactions, our understanding of complications, living with fatigue and so on.  I met a man who’d had a liver transplant, and was in great shape.  This blew away a few misconceptions I had about life after transplant ~ I was utterly inspired by his determination and ability to get on with life.  In fact, everyone I met was inspiring, as they were getting on with their lives, and making the most of it.  I even exchanged contact details with some members, and we now regularly keep in touch.

I listened to a particularly informative talk by Dr. Roger Chapman on PSC, and the direction in which his research was going.  It was all very exciting !  PSC SUPPORT was looking for additional volunteer support, so I spoke to Ivor and, after a few months of badgering him, I was given the opportunity to help to type-up and layout the PSC SUPPORT newsletter.

My whole outlook on PSC changed at last year’s meeting.  In a matter of hours, I changed from feeling in limbo and negative about my PSC, to feeling more positive and in control, both from learning up-to-date PSC facts from one of the world’s leading PSC specialists, and also from meeting and chatting with other PSCers.

So ~ to everyone who was at last year’s meeting, thank you ~ you changed everything for me.

Martine Walmsley.