Primary Biliary Cholangitis Insights

This week's must-know community updates, latest research & events

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Top Stories

Latest Research

In the study by Abdulrasak et al. (2025), cytopenias, which are reductions in blood cell counts, were identified as a significant but often overlooked complication in autoimmune liver diseases, including primary biliary cholangitis (PBC). The causes of cytopenias in PBC are primarily attributed to hypersplenism, a condition where the spleen is overactive, often due to portal hypertension (high blood pressure in the portal vein). This can lead to an enlarged spleen that sequesters or traps blood cells, causing their counts to drop.

The researchers emphasize the importance of a thorough diagnostic process that includes clinical history, blood tests, and potentially bone marrow evaluation. Treatment focuses on the root cause, such as using beta-blockers or performing a splenectomy (surgical removal of the spleen) for hypersplenism. The study highlights the need for careful management of these conditions, especially in the context of preparing patients for liver transplants.

Community News

PBC FoundationPBC FoundationFeb 28, 2025

It is 28 February, which means it is #RareDiseaseDay and, today, we are handing the floor over to PBC patients. Here is Danielle's story:

"I was diagnosed with PBC in December of 2019. I just had turned 31 and I felt like my life was caving in on me. I started looking up PBC on google and it scared me more than you can imagine. Google said the life expectancy for PBC patients was 10 years after diagnosis. It was devastating and I wasn’t ready for the end.

But then I found the PBC Foundation and was introduced to patients near me who also had PBC. Learning that people had been living with PBC for over 40 years and still were not in advanced stages of liver failure opened my eyes. It made me realize this wasn’t the end, it was only the beginning.

My first in-person meet-up happened in February of 2020, and it changed my life in more ways than you can imagine. It made me realize I wasn’t alone, and it helped me build a foundation that has brought me to advocacy.

Most of the women I met that day have since become some of my biggest supporters along this journey. I went from feeling like life was over to now wanting to make change in the world of PBC. It is now just the beginning for me. I am a support group facilitator, I am a PBC patient representative for the FDA, I am an international PBC advocate, and I am more than my PBC.

PBC FoundationPBC FoundationFeb 28, 2025

It is 28 February, which means it is #RareDiseaseDay and, today, we are handing the floor over to PBC patients. Here is Taise's story:

Hi my name is Taise Campbell and I’m 22 and I’ve been diagnosed with PBC for the last 3 years.

More Than You Can Imagine 💜💛

The itch from Primary Biliary Cholangitis (PBC) is more than you can imagine. It’s not just a mild irritation—it’s relentless, deep, and consuming. No amount of scratching helps, and at times, it feels like it could drive me crazy. But PBC isn’t just about the itch; it’s about the unseen struggles, the fatigue, and the daily challenges that come with it.

Yet, through PBC, I’ve found more support than I could have ever imagined. The community, the friendships, and the understanding from others who truly get it have made all the difference. This Rare Disease Day, I’m sharing my story to raise awareness—because PBC is more than you can imagine

PBC FoundationPBC FoundationFeb 28, 2025

It is 28 February, which means it is #RareDiseaseDay and, today, we are handing the floor over to PBC patients:

"I cannot praise The PBC Foundation enough. I was finally diagnosed with PBC (2012) following a traumatic road to a liver biopsy. My GP at the time (2008) told me I needed to stop drinking alcohol, and said we know you do because ”we” can tell? I may have had a glass of wine occasionally, but stopped that immediately, but still she didn’t believe me. By good fortune I saw a different GP for a separate reason, he picked up on my liver spike and referred me to a consultant. After many more blood tests I had a liver biopsy which confirmed PBC.

I had never heard of it, no member of my family had it, my first reaction was “I’m going to die”. I could find no information about PBC other than scary stuff. And then I found the PBC Foundation, I telephoned immediately, I will never forget putting the phone down and crying loud and long, I wasn’t going to die. It was Collette that answered the phone that day and more than she will ever know just talking to her was amazing, she knew she understood my fears and she gave me time.

I will always be a member of the Foundation and support when ever I can. My Rare Disease. Thank you to all the people who with and for The PBC Foundation. X"

PBC Foundation Post

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