Living with Hepatic veno-occlusive disease
A liver condition in which small liver veins become blocked, usually as a side effect of high-dose chemotherapy.
Understanding Hepatic veno-occlusive disease
It is usually a side effect of high-dose chemotherapy given before a stem cell transplant. Less often it is caused by eating certain plant alkaloids. It can occur at any age. It can cause yellow skin, an enlarged liver, and fluid retention.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Yellowing of skin and eyes (jaundice)
- Enlarged liver (hepatomegaly)
- Fluid in the belly (ascites)
- Belly pain
- Weight gain
- Kidney problems
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
GARD says it is usually a side effect of high-dose chemotherapy before stem cell transplant. It can also be caused less often by eating certain plant alkaloids.
Also known as: budd chiari syndrome; hepatic sinusoidal obstruction syndrome; hepatic vod; liver veno-occlusive disease; sinusoidal obstruction syndrome; terminal hepatic lobular vascular occlusion
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 Hepatic veno-occlusive disease.
Explore research for Hepatic veno-occlusive disease
Explore actively recruiting Hepatic veno-occlusive disease studies with HealthSpark.
Find actively recruiting studies for Hepatic veno-occlusive disease 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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