Living with Primary biliary cholangitis
A long-term autoimmune liver disease in which bile ducts become inflamed and damaged, more common in women.
Understanding Primary biliary cholangitis
Bile builds up and can lead to liver scarring and cirrhosis. It is more common in women. Many people have no symptoms at first and may not for several years. It is often found through abnormal blood tests. Blood tests for anti-mitochondrial antibodies can help confirm the diagnosis.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common early symptoms:
- Fatigue
- Itchy skin
- Abdominal pain
- Jaundice (yellowing of skin and eyes)
- Swelling in the legs and feet
- Fatty deposits around the eyes (xanthelasma)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include digestive system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association and Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists)
- Expert care
- Expert lists: Autoimmune Association, Global Autoimmune Institute
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Autoimmune Association and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says PBC is an autoimmune disease in which the immune system mistakenly attacks healthy bile duct cells. It is thought to be caused by a combination of genetic susceptibility and environmental triggers.
Also known as: biliary liver cirrhosis; cholestatic cirrhosis; chronic non-suppurative destructive cholangitis; chronic nonsuppurative destructive cholangitis; hanot syndrome; hanot's cirrhosis
Patient organizations
- Autoimmune AssociationPrimary biliary cholangitis · United States
- Global Autoimmune InstitutePrimary biliary cholangitis · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary biliary cholangitis.
Explore research for Primary biliary cholangitis
Explore actively recruiting Primary biliary cholangitis studies with HealthSpark.
Find actively recruiting studies for Primary biliary cholangitis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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