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At Intercept, our work is motivated by our desire to help patients and families who struggle with chronic liver diseases and need better treatment options.

PBC Disease Information

What is PBC?

PBC is a rare liver disease that is caused by an autoimmune reaction. The autoimmune reaction damages bile ducts in the liver. Bile ducts are tube-like structures that carry bile from the liver to the intestine to help with the digestion of food.

PBC

When bile is not able to move through the bile ducts, it collects in the liver and causes damage. PBC is progressive, which means that the damage gets worse over time. Starting with inflammation, the damage can cause fibrosis, and then cirrhosis. In some cases, cirrhosis can lead to liver failure.

The rate of damage caused by PBC varies in different people. If left untreated, PBC can get significantly worse in 2 years, making it important to get an early diagnosis to start treatment as quickly as possible.

Once someone is diagnosed with PBC, it is important to talk to a doctor about getting regular liver function tests to track the progression of the disease.

Patient Experience

Ally noticed itchy hands and feet in the summertime, but for years she thought it was just caused by the hot weather. Now that she has
been diagnosed with PBC,
she knows that it is a symptom
of her condition.

Ally, Cleveland, Ohio,
diagnosed with PBC

Who is at risk of developing PBC?

It is estimated that 90% of people who are diagnosed with PBC are women. Many people who are diagnosed with PBC are between 40-60 years of age. It is important to note, however, that men and young women can also develop PBC.

What are the symptoms of PBC?

The most common symptoms of PBC are pruritus, or itching, and fatigue. Some people with PBC can also experience dry eyes and mouth. For people with more advanced PBC, serious liver damage can cause jaundice, or a yellowing of the skin and eyes.

Many people do not experience any symptoms at the beginning of their PBC. The only sign that they have PBC is that abnormalities appear in their liver function test results.


Patient Experience

Soon after they got married, Ally and her husband decided to be more proactive about their health, starting with getting routine physical exams. At Ally’s exam, her doctor discovered her PBC and started her on treatment. Ally says that she and her husband are glad they made a commitment to each
other to take better care
of their health.

Ally, Cleveland, Ohio,
diagnosed with PBC

How is PBC diagnosed?

Doctors can test for PBC by taking blood samples and measuring certain chemicals related to liver function. The tests will show if there are elevated levels of alkaline phosphatase (ALP) and if antimitochondrial antibodies (AMAs) are present, which can be indicators of PBC.


Patient Experience

Ally turned to the PBC community for support when she was first diagnosed with the disease. Ally found that it was very helpful for her to reach out to others who understand what she was going through with her PBC.

Ally, Cleveland, Ohio,
diagnosed with PBC

What resources are available for people with PBC?

Many people who are diagnosed with PBC find it helpful to connect with the PBC community so they can be in touch with others who share their disease. One way to get involved in the PBC community is to contact one of the well-established PBC patient advocacy and support groups. The groups are run by people who also have PBC and who have created a network of individuals and families affected by PBC.


Websites of PBC advocacy groups:

PBCers

The largest PBC online support group, with almost 3000 members worldwide

Website: PBCers.org
Mailing address: PBCers Organization, 1430 Garden Road, Pearland, TX 77581
Email: PBCersOrg96@aol.com
Contact Linie Moore, President

PBC Foundation

A patient organization in the UK providing support to people with PBC and their families and friends

Website: pbcfoundation.org.uk
Mailing address: The PBC Foundation, 2 York Place, Edinburgh EH1 3EP, UK
Telephone: 0131 556 6811 (+44 131 556 6811 from outside the UK)
Email: info@pbcfoundation.org.uk

Canadian PBC Society

This national organization is made up of regional groups of patients and other concerned individuals throughout Canada.

Website: pbc-society.ca
Mailing address: Canadian PBC Society, 4936 Yonge Street, Suite 221, Toronto, Ontario M2N6S3, Canada
Telephone: 1-866-441-3643
Fax: 705-456-9872
Email: info@pbc-society.ca

*Formerly known as primary biliary cirrhosis.

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