When Collette Thain was given the devastating news that she had a rare disease of the liver ducts, she had no idea that this diagnosis would be the spur to her setting up an international charity, the PBC Foundation.
It now has 10,000 service users in 70 countries and celebrated its 20th anniversary this year.
Collette, of Blackford in Edinburgh, said: “PBC stands for Primary Biliary Cholangitis and is a progressive autoimmune liver disease, with no known cause or cure.
“It’s not related to alcohol or drug abuse and symptoms include extreme chronic fatigue, severe itching, dry eyes and dry mouth and joint pains. Advanced complications include swelling of ankles and abdomen and can lead to the need for a liver transplant.
“It’s not very well understood because so few people have heard of PBC. It is extremely debilitating and sufferers tend to be women in their late-30s or older.
“When I was diagnosed, I wanted to find other people with PBC to so we could talk and share our experiences but there was so little out there that I just decided I would do something myself. Together, with my family and with the help of the medical profession, we began producing leaflets for patients, GPs and the general public.
“Through fundraising throughout the UK, we put together a compendium which covers all aspects of PBC from diagnosis, treatments, self-help and so on which is issued to every new service user and any member of the medical profession upon request.
“We were able to set up 24-hour helpline for patients and and this has been running for 15 years. We have also funded various research projects, resulting in a quality-of-life questionnaire called the PBC 40 and this continues to be used by the medical profession throughout the world when assessing patients presenting with PBC”.
Collette who has continued to work as the CEO throughout the life of the charity, was awarded an MBE for her work in 2003, which she describes as “an unbelievable honour”.
She said: “I had two young children when I was told I had PBC and truly thought my life was going to end. Anybody living with a chronic illness like this will understand the emotions of despair and fear that you feel, and when it’s compounded by a lack of information or support, you don’t know which way to turn.
“I needed information and quickly realised that so many other people were in the same position as myself and so I needed to share it with others.
“I’d do anything not to have PBC but I sometimes have to pinch myself that we now have this international charity which advises the medical profession and pharmaceutical industry and literally started from my kitchen table”.