What's in a name? Redefining PBC.
Life with PBC is so much more than the risk of developing cirrhosis. And when some people hear the word "cirrhosis," they may think PBC is related to alcohol—a misconception that may have negative consequences.
That's why people all over the world living with PBC have united to change what those 3 letters stand for—from primary biliary cirrhosis to primary biliary cholangitis. This change will make the name more medically accurate and, perhaps more importantly, help people focus on a positive outlook for life with PBC.
What is primary biliary cholangitisa (PBC)?
The big picture
PBC is a progressive and chronic autoimmune disease that affects the bile ducts in the liver. There is medicine available that may help slow the progression of the disease, and healthcare providers can monitor PBC with simple blood tests every 3 to 6 months to see if the medicine is working well in a particular person. It is important to make a long-term treatment plan to manage your disease and your symptoms so you can help prevent serious health issues and the possible need for liver transplant.
a Formerly known as primary biliary cirrhosis.
Let’s take a closer look.
A disease that starts spontaneously and without obvious cause
Related to or affecting the bile ducts in the liver
Inflammation of the bile ducts
PBC is a progressive and chronic disease.
This means PBC can get worse and will not go away over time.
PBC is an autoimmune disease.
- It causes your body to attack itself
- When the body attacks its own cells, it causes inflammation and damage
- With PBC, your body attacks your own bile ducts in the liver
Your bile ducts play an important role in keeping your liver healthy.
- Bile ducts are tubes that carry bile from your liver to your small intestine to help with digestion
- PBC damages bile ducts and causes bile to get trapped in your liver
- Bile buildup can be toxic and can damage your liver tissue
Bile buildup in your liver tissue is called cholestasis. Cholestasis can cause harmful scarring in the liver, known as fibrosis.
- Worsening fibrosis can lead to cirrhosis, which severely interferes with the liver's ability to function
- The cirrhosis caused by PBC is not related to drinking alcohol
- Even people who don’t drink alcohol can get cirrhosis from PBC
“...[W]hen I say biliary cirrhosis, instantly people heard ‘cirrhosis.’ It’s that word. [T]hey instantly think, ‘Oh, you have a liver disease. It’s cirrhosis—you must have been an alcoholic.’”
— Nishele, Minnesota
“I thought everyone else who I tell [about my PBC] is going to think this is to do with alcohol abuse. You know? And people, as soon as you mention liver cirrhosis, you just do jump to that conclusion.”
— Wendy, England
What causes PBC?
The exact cause of PBC is unknown; however, it is known that PBC is not caused by drinking alcohol
PBC is not contagious, and it’s not your fault
Scientists think PBC can be inherited; if one person in a family has PBC, other members of the family are more likely to have it as well
Environmental factors, such as being exposed to cigarette smoke or certain chemicals, may play a role in causing PBC
You can take action.
By working with your healthcare team and taking medicine for your PBC, you can help slow disease progression — protecting your bile ducts, your liver, and your health.