PBCers Organization

10/01/2026

More media coverage of PBC. Hilary was interviewed by Fox Carolina today. Our personal stories are getting attention.

Primary biliary cholangitis, or PBC, affects less than 1% of the population. Doctors do not know exactly what causes it, and there is no cure. Now, a Western North Carolina woman is teaming up with others to help people recognize the subtle symptoms of this sometimes debilitating disease.

09/30/2026

Sharing information about a live webinar on October 20 at 8PM EST for loved ones called “Supporting Your Loved One With PBC.” Here’s a link for registering: https://cloud.us-patient.ipsen.com/webinar6RegHomePage

09/30/2026

Living with Primary Biliary Cholangitis (PBC) since 2003, Laurie describes the impact that extends far beyond physical symptoms. The condition has affected her relationships with family, friends, and colleagues, and it's influenced the career paths she's chosen to pursue, or pass on.
Laurie's reflection highlights a reality often missing from public conversations about chronic illness: the career sacrifices and relationship strain that come with managing a condition that isn't always visible. Our recent Voice of PBC survey also found that a significant share of those living with PBC report ongoing impact on both their social relationships and their ability to work.

09/30/2026

Help us get accross the finish line! We will start analyzing data soon and need YOUR journey shared. All PBC patients can enroll! Https://TheLiverMatrix.acrossmatrix.com
Already enrolled? Please complete the surveys and share!

09/29/2026

As PBC Awareness Month comes to a close, we are so grateful to FOX59 Midday Show in Indianapolis for highlighting this important patient story with Donna and helping elevate awareness. Check out the full segment and please like, share, or comment to help spread the word!

INDIANAPOLIS — September is Primary Biliary Cholangitis awareness month. Survivor Donna Lowhorn shares her story on living with PBC with Daniel Miller on FOX59 Midday News.

09/28/2026

For Donna, Primary Biliary Cholangitis (PBC) shows up most in the fatigue. She describes pushing through her day only to feel completely exhausted, but even naps aren't enough. Alongside the fatigue comes a fuzzy-headed feeling and thoughts that aren't as sharp as she'd like them to be. She manages it the best way she can by resting and trying to recover when possible.
Donna's account reflects two of the most significant findings from our recent Voice of PBC survey: 66% identify fatigue as their most difficult daily challenge, and 43% report ongoing cognitive symptoms, or brain fog. For many, these aren't minor inconveniences, they shape major life decisions.

09/27/2026

Living with PBC is hard enough. The misconceptions make it harder.
In our recent Voice of PBC survey, 60% of respondents have been told they "don't look sick, so it must not be serious," 53% have been dismissively told their condition is caused by alcohol or drugs, and 51% have had their fatigue brushed off as "just being tired.”
These aren't just hurtful comments. They're barriers to being believed, understood, and supported. This PBC Awareness Month, let's replace assumptions with facts.
Learn more: https://pbcers.org/voices-of-pbc/

09/26/2026

Earlier this year myself and other PBC patients participated in a project with Gilead called "Finding the Words", part of a series called "All the Feelings". We met with a poet who talked with us about your experiences with PBC and she turned our conversations into poetry. Previously the series used art and fashion to portray PBC patients feelings in an effort to help make the lived experience of PBC more visible and understood.

Creative storytelling, through poetry, art and film, can translate the invisible symptoms and emotions of PBC into something others can truly understand.
Finding the Words gave me and other people living with PBC a new way to share our stories authentically, on our own terms.
Initiatives like this are helping build a wider community of understanding, so people newly diagnosed with PBC don't have to navigate it alone.

Here is my poem.

09/25/2026

For Brenda, Primary Biliary Cholangitis (PBC) is a daily struggle. She says she isn't the same person she was five years ago: cognitively, things feel different, and the itching has become nearly unbearable. But what frustrates her most isn't the physical symptoms, it's the assumption people make the moment they hear the word "liver disease."
PBC is an autoimmune disease, where her own immune system is attacking her liver, not a result of alcohol use or lifestyle. Yet that assumption follows her anyway, and she believes it's a stigma that needs to be broken.
Her experience reflects one of the clearest findings in our recent Voice of PBC survey: 53% of people with PBC have been told their condition is caused by alcohol or drugs, and 57% have felt judged or misunderstood because of their diagnosis. Liver disease carries a stigma that has nothing to do with the reality most patients live with.