PBC: In Their Own Voice
Living with Primary Biliary Cholangitis (PBC) means navigating fatigue, uncertainty, and stigma that few truly understand, until now. Between June and August 2026, 210 people living with PBC opened up and shared their stories with us: their diagnosis journeys, the daily symptoms they carry, the emotional weight of the disease, and the misconceptions they’ve had to push back against again and again.
At PBCers, we’ve always believed that the people living with PBC are the true experts on what this disease really feels like. That’s why we created the Voice of PBC survey, a national effort to make sure their voices, not just the medical facts, are part of the conversation.
We’re sharing these results in recognition of PBC Awareness Month, because your voices deserve to be heard. Thank you to everyone who shared their experiences with us
Resources
Voice of PBC Survey: Results and Key Findings
Video: If I Could Describe PBC in One Word
Video: My Biggest Concern Living with PBC
What People Think
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Dwayt Harder
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