‘PBC – The Bigger Picture’ campaign launched by PBC Foundation’

‘PBC – The Bigger Picture’ campaign launched by PBC Foundation’

‘Those of us who have lived with PBC for a long time have seen how far we have come, in terms of both treatment and patient support,’ says Collette. ‘When I was first diagnosed with PBC, UDCA (ursodeoxycholic acid) wasn’t available and I was told I had a life expectancy of just a few years. Now, provided there is a good response to UDCA, those diagnosed with PBC can be reassured that they will enjoy a normal life expectancy and a good quality of life which is little short of a miracle.

‘I was sent home from the doctors without anywhere to turn for support or guidance. Today, thanks to the amazing efforts of patient facing organisations such as our own PBC Foundation and some extremely dedicated specialist clinicians, those diagnosed and living with PBC can easily access top quality clinical advice about their condition, talk to others with PBC and also, should they wish to, become involved with and support the PBC community.


‘That is real progress. However, we still have more work to do. We still hear from members who, despite the EASL Guidelines, are still being underdosed with UDCA, or those who, because they look ‘well’ are not given allowances at work for debilitating symptoms such as fatigue or at home for anxiety or stress.

‘We now must continue to inform our health professionals so that we can receive the most effective healthcare and drug regimen, receive new treatments if necessary and be offered the opportunity to take part in research projects. We need to educate our employers and our families to take seriously the needs and difficulties of living with PBC and how best to manage it.

‘That is why we launched PBC The Bigger Picture. If our clinicians provide the correct treatment, if we take management of our condition and live the healthiest lifestyle we can, if our employers, families and friends support us then we can maximise the changes of a good disease outlook and quality of life.

‘PBC is not just an illness with a treatment. It is a lifelong condition that affects and is affected by, every area of our lives. That is why, whether you are a patient with PBC, or a clinician treating the condition or an employer or family member of someone with PBC it is vital to look at The Bigger Picture.’