Living with Autosomal dominant polycystic liver disease
An inherited condition with many fluid-filled cysts in the liver, often without symptoms.
Understanding Autosomal dominant polycystic liver disease
Many people with it have no symptoms. Some have belly discomfort from a swollen liver. It is usually found in adults. Liver cysts also occur in about half of people with polycystic kidney disease, but kidney cysts are uncommon in this condition.
Signs & symptoms
Symptoms vary from person to person, and many people have none. GARD lists these among the most common:
- Many cysts in the liver
- Enlarged liver (hepatomegaly)
- Belly bloating
- Feeling full quickly when eating
- Multiple kidney cysts
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 and genetic 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); Genetic specialists (geneticists)
- 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
Most cases are inherited in an autosomal dominant way, meaning a change in one copy of a gene can cause it. In some cases it seems to happen with no clear cause.
Also known as: ad polycystic liver disease; adpcld; adpld; congenital cystic disease of liver; congenital cystic liver; congenital hepatic cyst
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 Autosomal dominant polycystic liver disease.
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