Collette Thain MBE
CEO, PBC Foundation
People with PBC can take an active role in their diagnosis and in managing their condition.
Living with a progressive condition like primary biliary cholangitis (PBC) – which has no known cause or cure – takes some getting used to, says Collette Thain MBE. Collette set up the PBC Foundation specifically to support people like herself, from all over the world living with this autoimmune condition. “Our aim is to help people through this journey,” she says.
The journey to diagnosis
Like Collette, people often start their journey with PBC with multiple trips to the GP for non-specific symptoms such as heavy limbs and fatigue. A liver function test is a key diagnostic tool, but Collette says that all too often patients – 90% of whom are women – find themselves labelled as suffering something ‘psychological’. “But why should a GP assume that?” she asks. “Why are women not pushing back with questions such as: ‘Why do you think my symptoms are ‘emotional’? Or ‘why do you not think a blood test is justified?’ Patients need to start seeing themselves as a joint partner with the GP.”
Our aim is to help people through this journey.
Making lifestyle changes
Chronic fatigue and problems with concentration are long-term features of life with PBC and for some people this can force significant lifestyle changes such as giving up work, or particular activities.
The Foundation supports people through those changes: to reduce the isolation they may feel; to give them the opportunity to share their experiences and to help people maximise their quality of life through self-management.
A number of factors make a real difference in living with PBC: exercise, fun and laughter, eating healthier and reducing processed food, music, relaxation and mindfulness, to name a few. So many patients benefit from active self-management, irrespective of their PBC journey. “PBC is real, the symptoms are real, the struggle is real, but we can help ourselves”, says Collette, “Our health care really does begin with self-care.”