My family and I are originally from Newcastle upon Tyne in the North East of England and we are known as Geordies, we have been in Melbourne Australia since 1968. We have a daughter, son and seven grandchildren (5 boys & 2 girls)
five great-grandchildren  (3 boys and 2 girls).

In November 1988 I was diagnosed with a rare liver disease called Primary Biliary Cirrhosis (PBC) which is classed as an auto immune 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 3/4.

                       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, 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.

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 locally and 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 Australian's Woman's Weekly,  and also in the helpline of Woman's Day and a number of local newspapers.

Due to a request from Rosemary to remove the articles as she just wants to get on with a normal life as it has become a problem and is very stressful for her with PBCers contacting her.  I have removed them. 

Although I have permission from the local newspaper net work to have the articles on my Web page the articles portrayed both of our stories about PBC and Australian PBC Support Group and how we met so in respect of Rosemary's wishes for her to get on with her life I have removed them.

At that time we had heard from 170 PBCers Australia wide.  In July 98 we formed the Australian Support Group  for people with PBC, ( unfortunately the group is no longer in operation ) we were very fortunate that doctors who specialized in PBC and other auto immune diseases became involved with the group and gave talks about PBC,  liver transplants, and other auto immune diseases associated with PBC, at the PBC meetings at local hospitals. A quarterly newsletter The Biliary Bulletin was sent to all members and was produced and edited by Jocelyn, one of the first two PBCers we met in 1998 through the UK  PBC support group,  The PBC Foundation.

When we decided to 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, 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.

Our first PBC 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 at hospitals here in Melbourne with eminent doctors who specialize in PBC giving talks to the group.

Through ill health and also personal reasons etc., I left the group in 2000 as I had to have an operation to remove a large cyst from within my liver in July 2000 ,  apart from PBC I have osteo arthritis. the left hip and spine are the worst,  rheumatoid arthritis, fibromyalgia, osteoporosis, hiatus hernia, gastroesophageal reflux disease but I am so glad that I did what I had set out to do when I returned from the UK  in 1993 and that was to let others know they were not alone with PBC and to form a support group which I am sad to say is no longer in operation.

I am now involved in volunteer work at my local community centre. I help with reception duties and also teach Beginners Computer Classes, Web page Design and also how to send E-mail and attachments and how to surf the Web and also run a Computer Club.

I especially enjoy my beginners class for seniors and the computer club as it is a joy to see the older generation keeping up with progress and it helps them communicate with their grandkids.