PBC Awareness

04/13/2026

Thanks for being a top engager and making it on to my weekly engagement list! 🎉

Jen A. Nyberg, Mariko Okada, Jackie Holcombe Anthony, Jan Norman

04/13/2026

Many people believe that PBC and Cirrhosis is the same disease. This infographic lays out the differences between the two. A linked to a video is also included below. Feel free to share for awareness and educational purposes. The more we learn, the more informed we all are of this disease.



https://www.webmd.com/digestive-disorders/video/pbc-differs-from-liver-cirrhosis

04/10/2026

ATTN: Gilead Sciences will be inviting people living with PBC, before and during the , to share their stories and lived experiences. These stories will be thoughtfully translated into poems by a professional poet. The poems will be theirs to keep and will also be displayed at Gilead’s ATFwPBC booth at EASL.

They will be invited to share their story either through a Zoom interview (approximately 45 minutes) with our poet or by submitting a written testimony about their experience living with PBC, which will then be translated into a poem. To ensure equal participation before and during the congress, there will be no compensation associated with this activity.

If you wish to participate, please email us at: tequoia@pbcawareness.org

04/10/2026

If you’re newly diagnosed with Primary Biliary Cholangitis (PBC), here’s encouraging news: doctors are getting better at spotting a hidden liver condition early – even before cirrhosis develops.

A new 15-year study found that nearly 1 in 3 people with early-stage PBC also have a condition called "non-cirrhotic portal fibrosis" (NCPF) – which affects small blood vessels in the liver and can cause high blood pressure in the portal vein (the main vein going into your liver).

Why this BENEFITS you as a PBC patient:

✅ Earlier warning signs – This study shows doctors can now identify blood vessel issues even when your liver isn't scarred yet. That means more time to act.

✅ Better monitoring – If you have higher liver enzymes (ALT/AST), your doctor may check for NCPF. Knowing this helps tailor your follow-up plan.

✅ Potential new treatment targets – Researchers found increased blood vessel growth and immune activity in these patients. This opens doors for future therapies targeting the immune system or blood vessels directly.

✅ Personalized care – Not all PBC is the same. This helps explain why some patients develop complications (like an enlarged spleen or varicose veins in the esophagus) even with mild liver disease.

What you should do:
👉 Ask your hepatologist: "Could I have NCPF or early blood vessel changes?"
👉 Keep tracking your liver enzymes – sudden rises in ALT/AST might prompt a closer look.
👉 Don't ignore symptoms like fatigue or abdominal swelling, even if your fibrosis stage is low.

The bottom line:
PBC isn't just about bile ducts. Your liver's blood vessels matter too – and now science is catching up. This means more personalized, proactive care for you.



You can review the study for yourself at this link:

Background: Non-cirrhotic portal fibrosis (NCPF) has been reported to contribute to portal hypertension in primary biliary cholangitis (PBC) preceding the de...

04/10/2026

2 days away! The 2026 ReBirthday Celebration is almost here 💚💙

Join us for this special virtual event honoring liver transplant recipients and the incredible power of organ donation. Don't miss the opportunity to hear inspiring stories, celebrate hope, and learn about the life-saving impact of liver transplantation.

🗓️ April 11
🖥️ Free & virtual
👉 Register today: https://alf.social/rebirthday26

04/09/2026

We have received many requests from followers asking how they can volunteer and advocate for PBC patients. PBC Awareness is grateful for all of our volunteers and supporters and would not be able to do this work without you. If you would like to become a volunteer and assist us in our mission to raise awareness of PBC and support the PBC community, please fill out the form in the link below. We'd love to work with you!



https://form.jotform.com/260984085147061

04/08/2026

Approximately 130,000 Americans are living with Primary Biliary Cholangitis, a rare autoimmune liver disease. PBC Awareness, NFP, a 501(c) (3), aims to raise awareness of the disease and advocate for PBC patients based in the U.S. Your generous donation is essential to advancing our mission. Please consider making a donation through the link below! Every dollar is tax-deductible and will benefit the PBC community.

https://app.teamfi.works/fundraiser/12531

04/08/2026

Ipsen will be sponsoring an informative PBC webinar:

Staying on top of PBC: Managing symptoms and lab results with Dr. Aparna Goel (Hepatologist) and Bob (living with PBC)

Tuesday, April 28 at 8 p.m. ET

Discussion about how PBC progresses, understanding lab values and symptoms, and tools to monitor symptoms and lab values

Please use the link below to register:
https://cloud.us-patient.ipsen.com/Webinar4RegHomePageStag?utm_source=webinar&utm_medium=digital&utm_campaign=2026+Ipsen+IQIRVO+Patient+Branded+Patient+Webinar&utm_content=NON-US-003954&utm_term=Webinar+Registration

04/08/2026

من الحالات اللي بنشوفها وليها سيناريو مشهور
Primary billiary cholangitis

middle aged female patient
Presented by Jundice
The patient reports that for many years she has been feeling tired and often excessively sleepy.
On some occasions, she would also feel very itchy on her body.
The patient does not have any significant past medical history
Or may be associated with other autoimmune disease
Laboratory investigations showed increase levels alkaline phosphatase, IgM antibodies as well as anti-mitochondrial antibodies.
➖➖➖➖➖➖➖➖➖➖➖➖➖➖➖➖
Primary biliary cholangitis

▶️Primary biliary cholangitis (previously referred to as primary biliary cirrhosis) is a chronic liver disorder typically seen in middle-aged females (female:male ratio of 9:1). The aetiology is not fully understood although it is thought to be an autoimmune condition. Interlobular bile ducts become damaged by a chronic inflammatory process causing progressive cholestasis which may eventually progress to cirrhosis. The classic presentation is itching in a middle-aged woman

▶️Associations

Sjogren's syndrome (seen in up to 80% of patients)
rheumatoid arthritis
systemic sclerosis
thyroid disease

▶️Clinical features

early: may be asymptomatic (e.g. raised ALP on routine LFTs) or fatigue, pruritus
cholestatic jaundice
hyperpigmentation, especially over pressure points
around 10% of patients have right upper quadrant pain
xanthelasmas, xanthomata
also: clubbing, hepatosplenomegaly
late: may progress to liver failure

▶️Diagnosis

immunology
anti-mitochondrial antibodies (AMA) M2 subtype are present in 98% of patients and are highly specific
smooth muscle antibodies in 30% of patients
raised serum IgM
imaging
required before diagnosis to exclude an extrahepatic biliary obstruction (typically a right upper quadrant ultrasound or magnetic resonance cholangiopancreatography (MRCP)

▶️Management

first-line: ursodeoxycholic acid
slows disease progression and improves symptoms
pruritus: cholestyramine
fat-soluble vitamin supplementation
liver transplantation
e.g. if bilirubin > 100 (PBC is a major indication)
recurrence in graft can occur but is not usually a problem

Complications
cirrhosis → portal hypertension → ascites, variceal haemorrhage
osteomalacia and osteoporosis
significantly increased risk of hepatocellular carcinoma (20-fold increased risk)

04/08/2026

FDA approves GSK’s Lynavoy™ (linerixibat), the first treatment for cholestatic pruritus in PBC, offering rapid and sustained itch relief

04/07/2026

If you or a loved one has just been diagnosed with Primary Biliary Cholangitis (PBC), here’s something important to know: A new study shows that men with PBC may face more severe liver problems and worse outcomes than women.

Researchers looked at over 900 PBC patients and found that men were more likely to need a liver transplant or have serious complications (like infections or blood clots) while in the hospital. Men also had worse liver test results and were younger when hospitalized compared to women.

The good news? Knowing this helps doctors monitor male patients more closely and tailor treatment plans. If you’re a man with PBC, stay on top of your check-ups and medication (like Ursodeoxycholic acid) — proactive care makes a difference.

Key takeaway:
*PBC affects everyone differently.
*Men: Don’t ignore symptoms — early diagnosis saves lives.
*Women: Keep managing your health, but know that research is improving care for all.

Read below for more information:
https://www.nature.com/articles/s41598-026-44615-0

Limited evidence suggests men with Primary Biliary Cholangitis (PBC) experience worse outcomes than women. The aims of this study were to assess s*x-related differences in outcomes in PBC, and to determine whether differences were more specific to PBC than other cirrhosis aetiologies. This study con...