Besides unpleasant symptoms and diagnosis delays, PBC sufferers also have to contend with stigma and discrimination due to misconceptions that their condition is linked with alcohol misuse. Until recently, the condition was known as primary biliary cirrhosis but the PBC Foundation lobbied for the name to be changed to ‘cholangitis’ following feedback from its members.

PBC patients have often experienced stigma due to the belief that their condition is self-inflicted and some have even struggled to obtain a mortgage or life or travel insurance. In a medical first, the name change has been adopted by the European Association for the Study of the Liver (EASL), along with its American and Asian counterparts, as well as the World Health Organization and all relevant medical journals.

“Patients will no longer be discriminated against through misunderstanding of the condition,” says Collette Thain. “This is one small change that will bring huge positive changes to the quality of life of people affected by PBC for generations to come.”

A survey by the PBC Foundation in April 2014 found that 81 per cent of members actively disliked the word ‘cirrhosis’ and that, overall, 80 per cent were in favour of changing the name. Eighty-two per cent of healthcare professionals who responded to the survey also favoured the name change.