National Voice of PBC Survey Unveils the Significant Physical, Emotional and Social Impact of PBC
ROCHESTER, N.Y., Sept. 01, 2026 (GLOBE NEWSWIRE) — This September, in recognition of PBC Awareness Month, The PBCers Organization released the results of its national Voice of PBC survey, capturing the lived experience of 210 people living with Primary Biliary Cholangitis (PBC), a rare, chronic autoimmune liver disease that can lead to inflammation and long-term liver damage. The findings reveal a community facing a heavy, often invisible burden. For many patients, the stigma surrounding PBC is just as hard to live with as the physical and emotional symptoms of the disease itself.
PBC overwhelmingly affects women, who made up 96% of survey respondents, and is frequently diagnosed incidentally: 75% of those surveyed learned they had PBC only after a routine blood test revealed abnormal results, not because of any warning symptoms. For those who did notice symptoms before diagnosis, fatigue, itching, dry eyes and mouth, and brain fog were among the most commonly reported.
That disconnect between how patients look and how they actually feel sits at the heart of the stigma so many respondents describe. 60% of respondents said they’ve been told outright that they “don’t look sick, so it must not be serious.”
“You can’t see that I have an autoimmune disease. You can’t see that I am dropped dead tired,” said Maureen, who lives with PBC. “People assume that if you look fine, you must feel fine. It’s an itch that you can’t scratch, and it’s literally unbearable at times, but from the outside, none of that shows.”
Compounding the stigma, more than half of respondents said their condition has been dismissively attributed to alcohol or drug use, a misconception tied to PBC’s former name, primary biliary cirrhosis, before it was changed to primary biliary cholangitis to more accurately reflect its autoimmune nature. For some, that fear of being misjudged has led to silence altogether, choosing not to disclose their diagnosis at all.
The survey also captured the physical weight of living with PBC: 66% identified fatigue as their single most difficult daily challenge, more than any other symptom, and nearly three-quarters said they fear disease progression, a constant undercurrent of uncertainty that shapes how patients plan their lives, careers, and relationships.
“The most challenging thing is the energy level that I once had,” said Donna, who has lived with PBC for more than two decades. “It takes me a lot longer to accomplish anything, and that’s hard to explain to people who’ve never lived with a chronic illness. You learn to plan your whole life around energy you don’t always have.”
Key Survey Findings
Physical Impact
- 75% were diagnosed only after an abnormal routine blood test, with no prior warning symptoms
- 57% report severe or some impact on their physical well-being
- 87% live with at least one additional autoimmune or related condition alongside PBC
- Only 45% have seen improvement in their symptoms since starting current treatment
Emotional Impact
- 53% say fear of the future and uncertainty about their long-term health is their defining emotional response
- 49% feel misunderstood, saying others don’t truly “see” or understand the illness
- 51% report severe or some impact on their emotional well-being
- 44% report increased anxiety, and 33% report depression or low mood
Social Impact
- 60% have been told “you don’t look sick,” and 53% have been dismissively told their condition is caused by alcohol or drugs
- Only 30% feel very comfortable disclosing their diagnosis to coworkers, compared to 67% with immediate family
- 48% report severe or some impact on their social interactions
- 58% report experiencing financial strain related to their PBC
“These findings make it clear that PBC is much more than just a medical diagnosis, it’s a daily reality shaped by fatigue, fear, and ongoing stigma,” said Carol Roberts, President, PBCers Organization. “This PBC Awareness Month, we’re asking the public and healthcare community to listen to these voices and help us change the conversation around liver disease.”
For full survey details and to learn more about PBC, visit www.pbcers.org
*Voice of PBC Survey, The PBCers Organization, data on file. Survey conducted online June-August 2026.
About The PBCers Organization
The PBCers Organization, celebrating its 30th anniversary this year, is the online and in-person support group for people with Primary Biliary Cholangitis (PBC), care partners, and health care team members. We are your go-to resource for peer support and the latest information on PBC, committed to expanding awareness, reducing stigma, and improving quality of life for everyone affected by this disease.
Media Contact
Glenn Silver
FINN Partners
973-818-8198
glenn.silver@finnpartners.com
Videos accompanying this announcement are available at:
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https://www.globenewswire.com/NewsRoom/AttachmentNg/5fae3f84-7431-478d-b5da-8eafcc0f41e3
