A little about us 

In 2006 our then 21 year old son was diagnosed with ulcerative colitis (UC). Having read a bit about the disease we knew there was a very small possibility he could go on to develop primary sclerosing cholangitis, or PSC, as it is more commonly known. PSC occurs in about 3-7% of people who have UC, so we thought the chances of him developing this were really very slim. Colon cancer was our main concern at that stage, and we knew that regular colonoscopies would be the main preventative course of action.

Over the next few years some of our son's liver function tests always came back slightly elevated, but of themselves did not demonstrate the 'correct' clinical picture to consider these results might be related to PSC in any way. Time passed, liver test results remained mildly elevated, a liver biopsy was negative. Eventually towards the end of 2013, an ANCA workup was done and two ANCAs came back positive. While still not the normal clinical picture, it was decided an MRCP would be useful. It came back with the diagnosis that he may have early stage PSC. This was not the news we wanted to hear.

My husband is a Professor of Medicine. Although aware of PSC, he had not treated a patient with this disease and prior to our son's diagnosis, had only limited knowledge and second hand experience of PSC. Since our son's progression down the PSC path has begun, he has joined me on my journey as we both seek to learn as much as we can about PSC.  All we really could find out in those first early searches was information that was plentiful on the internet. Reading that our son had a median of 10-12 years to death or liver transplant was devastating. 

I tried to find as much information as I could; in particular, I wanted Australian data, statistics, guidelines and treatment options. I wanted to locate a support group. I needed to know there really were other people out there with this rare disease, and I wanted someone I could talk to, someone who would understand my feelings of guilt, loss, grief as I tried to deal with what this disease meant for my son and his family, and for all of us. Eventually I found the PSC Partners Seeking a Cure support group  and others which became my light at the end of a tunnel, in a way. Finally there were people who had this disease, who were parents, who understood, and importantly to me, some lived in Australia. Finding these Facebook groups was, in many ways, my sanity.

From this experience I've come across a lot of information, I've been in touch with wonderful, giving and knowledgable people. From this experience I know how hard it can be to find one's way around the internet. This website is my attempt to gather as many sites together as I can in one place, so that when one goes looking for information it will be a starting point, a springboard to go and explore the wealth of knowledge that is out there, without getting lost in the doom and gloom that a 'google' search may bring. It also aims to provide links to relevant Australian websites, well established US and UK sites, as well as to provide updates on the latest news and research about PSC.

As the goal behind this website is to gather and provide links to information about PSC and other related issues, it is our hope that users of this site will contact us to suggest other links, sites, support groups and so forth that can be added. Together we can build an Australian flavoured springboard to knowledge about PSC.

Page created 21.03.2014