September 10th is PBC Awareness Day, Know the Facts

September 8, 2023

Primary Biliary Cholangitis (PBC) Progresses Slowly, Warning Signs Could be Missed

This Sunday, September 10th, is PBC Awareness Day and American Liver Foundation (ALF) is encouraging everyone to know the facts and warning signs of this autoimmune liver disease. Primary Biliary Cholangitis, more commonly known as PBC, may progress slowly and many people do not have symptoms, particularly in the early stages of the disease. The disease mostly affects women between the ages of 45-65 and the most common initial symptoms are fatigue and itching of the skin (pruritus). 

​“Many people with PBC tell us how surprised they were to find out they had the disease,” said Lorraine Stiehl, Chief Executive Officer, American Liver Foundation. “While it’s more typically diagnosed in middle-aged women, we often hear of women in their early 20’s or in their late 80’s and early 90’s being diagnosed. Symptoms of PBC can be easily missed and misconstrued for so many other diseases. Early diagnosis is key to the best possible outcome for patients, so it’s important to speak with your doctor if you have any unexplained, persistent symptoms.”  

​While there is no cure for PBC, treatment can help delay the condition’s progression and manage complications. A liver transplant may be required in severe cases. Researchers estimate that in the U.S., about 65 out of every 100,000 women have PBC. In addition to the most common symptoms of fatigue and itchy skin, other symptoms may include abdominal pain, darkening of the skin, small yellow or white bumps under the skin or around the eyes, dry mouth and eyes, and bone, muscle or joint pain. As the disease progresses, symptoms of cirrhosis can develop including jaundice, swelling of the legs and feet (edema), enlarged abdomen from fluid accumulation (ascites), or internal bleeding in the upper stomach and esophagus from enlarged veins (varices). 

American Liver Foundation offers resources and support services for people affected by PBC. In addition to our free helpline and online chat, ALF offers a robust Facebook support group, Life with PBC: An American Liver Foundation Support Group, a video made just for kids to explain PBC, and several educational webinars with some of the nation’s leading experts on topics including PBC basicsclinical trials, and the latest in treatment and research

It’s important to know that people with advanced PBC are at risk for developing liver cancer. Patients, families and caregivers are invited to an upcoming free webinar, At Risk for Liver Cancer? Prevent the Progression, on September 14th from 2PM ET. This one-hour, live virtual program presented by American Liver Foundation and Meijer Specialty Pharmacy, includes a discussion with experts on steps you can take to prevent the progression to liver cancer. Topics include dietary impact, importance of early diagnosis, preventative measures to reduce cancer risk and life after a cancer diagnosis. Register at

About the American Liver Foundation

The American Liver Foundation is the nation’s largest non-profit organization focused solely on promoting liver health and disease prevention. The American Liver Foundation achieves its mission in the fight against liver disease by funding scientific research, education for medical professionals, advocacy, information and support programs for patients and their families as well as public awareness campaigns about liver wellness and disease prevention. The mission of the American Liver Foundation is to promote education, advocacy, support services and research for the prevention, treatment and cure of liver disease. For more information visit or call:1 800 GO LIVER (800-465-4837).

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