About The PBC Foundation
Primary Biliary Cirrhosis (PBC) is a progressive autoimmune liver disease, which is not related to alcohol or drug abuse and affects mainly women, the current ratio being nine women to one man.
Recent studies in the United Kingdom suggest that, in some places, the prevalence may be as high as one in one thousand women over the age of forty. There is no known cause or cure.
Diagnosis is sometimes difficult because PBC is relatively uncommon, therefore, many GPs are unaware of the disease and symptoms presented are not immediately connected with PBC.
This causes sufferers a great deal of distress as many are quite often misdiagnosed for a number of years. Although PBC is a relatively uncommon liver disease, it is the principal reason for liver transplants in this country.
The PBC Foundation works toward dispelling the misconceptions of Primary Biliary Cirrhosis. For example, many people, on hearing the word ‘cirrhosis’, automatically assume that Primary Biliary Cirrhosis is alcohol-related. Yet ‘cirrhosis’ simply means scarring.
The PBC Foundation runs a help-line and produces a magazine three times a year featuring clinical information, dietary advice and general information which may help improve the quality of life.
The PBC Foundation also supplies good quality medical information to its members through information packs on joining and through annual conferences around the United Kingdom where some of the top liver specialists in this country give up their free time to talk to people with PBC.
The PBC Foundation relies almost entirely on donations, not only to remain operational, but also to be able to initiate research projects into the cause and cure of PBC.
A three year Quality of Life Research Study investigating how best to improve life for sufferers of PBC is currently being supervised by Newcastle University, this is funded by the Community Fund at a cost of approximately £128,400.
A further research programme, of £75,000, is being launched at Aberdeen University in April 2003 into the causes of PBC, under the direction of Dr Matthew Wright. This has been funded entirely by members’ donations.
Our history
The PBC Foundation was founded by the Chief Executive Officer, Collette Thain, in December 1996.
Collette was diagnosed with Primary Biliary Cirrhosis eight years ago, in 1994, at the age of thirty?eight. The traumatic diagnosis followed many years of illness and deteriorating health, which doctors did not appear to understand.
Finally, medication administered for a serious bout of pneumonia caused severe liver problems. Recovery took almost two years and within this time, Collette was diagnosed with PBC.
Her determination that other people should not suffer through ignorance and lack of support as she did when she was first diagnosed, led her to found The PBC Foundation.
Initially, Collette ran The PBC Foundation from one room in her home with the help of volunteers, who were mainly family and friends. As the membership and resulting workload increased, a part-time member of staff was employed.
Now, six years later, The PBC Foundation is located in offices in Edinburgh with one full-time and two part-time members of staff. Membership continues to grow as more and more people are diagnosed with this condition.