My name is Doreen, in November 1988 I was diagnosed with a rare liver disease called Primary Biliary Cholangitis/Cirrhosis (PBC) which is classed as an autoimmune disease which destroys the bile ducts in the liver
I was informed when first diagnosed with PBC that I would need a liver transplant within 10 years. With the help of medication which is slowing down the damage to the liver, I am traveling along ok and have not reached transplant stage yet. I am in stage 4 with portal hypertension.
There is no known cause or cure It is NOT alcohol or drug related
When I was first diagnosed with PBC, I was very ill and depressed for the first 12/18 months, and as no support group existed here in Australia, my husband and I decided to returned to England to be with family and friends for a while.
Whilst there we got involved in raising funds for a new liver Transplant Unit at the Freeman Hospital Newcastle upon Tyne UK which I attended. During that time I met other people with PBC, especially one woman who had a liver transplant just before we left the UK.
I continued corresponding with her on my return to Victoria Australia in May 1993. In returning to the UK and meeting others with PBC, I obtained a more positive attitude and was able to look forward to the future. I was on Prednisolone for the first five years and in 1993 I was offered the chance to go into a two year trial for a new drug for PBC called Ursodeoxycholic acid known as Urso.
In May 1994, I had a story published in our local suburban newspaper The Journal, wishing to meet others with PBC and I was also interviewed on a local radio station about wishing to make contact with others who had PBC with the view to forming a support group. I got no response yet a PBCer lived only around the corner from where I lived, she did not see the article. We later made contact with each other in September 1996.
In May 1998 we began talking about trying to locate other people with PBC Australia wide. We had an article in the United Kingdom Settlers Association’s newsletter and also started writing to local newspapers, magazines etc., Gastroenterologists and doctors stating the wish to make contact with others with the view of forming the group; We had our story published in the October 1998 issue of the Australia’s Woman’s Weekly and also in the helpline of Woman’s Day.
When we decided to try and form the support group, I wrote to the doctor in England who was my liver specialist for the 2 years from 1991-1993, for any information about PBC. He informed us of the support group in England, The PBC Foundation UK, and also of a doctor here in Australia who was one of the doctors involved in a Low Prevalence study of PBC in Australia in 1992, which was published in 1995. A group of liver specialists here in Australia conducted the study in Victoria, and 84 patients were found with PBC at that time.
In July 98 we formed the Australian support group for people with PBC, we were very fortunate that doctors who specialize in PBC and other autoimmune diseases become involved with the group and give talks about PBC, liver transplants, and other autoimmune diseases associated with PBC, at the PBC meetings at local hospitals. 1998 we found over 170 PBCer’s Australia wide.
A quarterly newsletter The Biliary Bulletin was sent to all members and was produced and edited by another PBCer’s one of the first two PBCers we met in 1998 through the UK PBC support group,
Our first meeting was held at my house in August 98, a video about PBC was shown. Some PBCers had their partners with them who informed us, that watching the video had helped them understand what their partners were going through with PBC. We had a number of meetings since at hospitals here in Melbourne with eminent doctors who specialize in PBC giving talks to the group.
Through ill health I left the Australian PBC Support Group as I had an operation to remove a large cyst from within my liver in July 2000. Not long afterwards the support group ceased operation, I am very committed in trying to get PBCers here in Australia together as when you are first diagnosed with this rare liver disease you think you are the only one and it does help to talk to others that understand what you are going through.