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by Robert Mitchell-Thain, Chief Executive Officer of the PBC Foundation
01 March 2024
Associate Feature: Primary Biliary Cholangitis (PBC) – A hidden women’s health issue

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Associate Feature: Primary Biliary Cholangitis (PBC) – A hidden women’s health issue

I’d like to discuss  the profound impact of fatigue – not just any fatigue, but the kind that renders you unable to lift your arms to dry your hair or hang up wet laundry. This fatigue, combined with the stark reality of being told you have only five years to live, underscores the severity of PBC. Then there’s the relentless itch, likened to thousands of ants crawling beneath your skin, causing an uncontrollable burning sensation deep within.  

For far too many patients, this is the harsh reality of living with PBC, an autoimmune condition that affects the bile ducts in the liver. If left untreated, PBC can lead to liver failure and premature death. Despite being easily diagnosed and largely treatable, PBC remains significantly underdiagnosed, leaving countless patients without the support and treatment they desperately need.  

The condition affects mostly women, with many experiencing symptoms around the time of menopause. Yet, these symptoms are often dismissed, delaying crucial diagnosis and treatment. It’s imperative that these women are identified and treated promptly with life-preserving medications.  

Many patients affected by PBC find themselves grappling with profound questions about their future, wondering if they’ll have the chance to meet their grandchildren or witness their own children’s milestones like graduations. Too often, they’re forced to relinquish their roles at work, distance themselves from family, and withdraw from friendships. I understand this reality intimately, having witnessed my own mother navigate this exact journey.  

Yet, amidst the challenges, there is a beacon of hope that shines brightly: the PBC Foundation. From its humble origins in Dunfermline, this organisation extends its support to over 16,000 patients and their families and caregivers across more than 80 countries worldwide.   

PBC is rare but numbers are significant and exerts a disproportionate strain on liver transplant resources. To alleviate this burden, it is imperative that PBC receives the attention it deserves from policymakers and healthcare services. Adopting a Scottish national guideline is vital to ensure timely diagnosis and access to appropriate treatment.   

Let’s commit to prioritising awareness, diagnosis, and treatment, ensuring that individuals impacted by PBC can reclaim their lives and futures with confidence and dignity.  
About the PBC Foundation:  

Set up in 1996 by Collette Thain MBE (a PBC patient who was given five years to live) the Foundation provides information and support, advocates for patients in need of live-preserving treatments and helps with much-needed research into this debilitating, incurable condition.    
You can speak to Collette today for support in your own journey – or to learn more about hers – by contacting the Foundation directly.  

For more information go to:   
The PBC Foundation:  

The British Society of Gastroenterology:  

NHS patient information pages:

Ipsen UK Ltd, in collaboration with the PBC Foundation, have produced this article. The article was initiated and funded by Ipsen UK Ltd.  
Date of preparation Feb 24                      ALLSC-UK001143

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