Living with Budd-Chiari syndrome
A rare liver condition in which the veins carrying blood out of the liver are blocked.
Understanding Budd-Chiari syndrome
Blood backs up in the liver, which can enlarge the liver and spleen. Pressure rises in the portal vein (portal hypertension), which can cause enlarged veins in the esophagus and fluid in the abdomen (ascites). Severity varies with the site and number of veins affected. It most often occurs with something that makes blood clot more easily, such as pregnancy, a tumor, or a clotting disorder. In about one third of cases the cause is unknown.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Abdominal pain
- Fluid in the abdomen (ascites)
- Enlarged liver and spleen
- Swollen ankles and feet
- Enlarged veins in the esophagus (varices)
- Fever and tiredness
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.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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
It often occurs in people with a condition that makes blood more likely to clot, such as pregnancy, a tumor, a chronic inflammatory disease, a clotting disorder, an infection, or a myeloproliferative disorder. In about one third of cases, the cause is unknown.
Also known as: bdchs; budd chiari syndrome; budd-chiari syndrome, somatic; f5-related budd-chiari syndrome; hepatic vein obstruction; jak2-related budd-chiari syndrome
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Budd-Chiari syndrome.
Explore research for Budd-Chiari syndrome
Explore actively recruiting Budd-Chiari syndrome studies with HealthSpark.
Find actively recruiting studies for Budd-Chiari syndrome 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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