The Invisible Burden of a Rare Liver Disease

The Invisible Burden of a Rare Liver Disease
For people living with primary biliary cholangitis (PBC), the burden of disease can extend far beyond the liver. Debilitating fatigue, relentless itching, and other often-invisible symptoms can disrupt work, relationships, and daily routines, while misconceptions about liver disease add stigma to an already difficult experience. We spoke with Carol Roberts, president of the PBCers Organization, discusses her own experience with this rare autoimmune condition, what a recent patient survey reveals about its day-to-day toll, and how an evolving treatment landscape is changing expectations for care.