Living with Nodular regenerative hyperplasia of the liver
A rare liver condition where small clusters of new liver cells form, often with no symptoms but sometimes raising pressure in a liver vein.
Understanding Nodular regenerative hyperplasia of the liver
It often causes no symptoms, so it may go undiagnosed. In some people it leads to high blood pressure in the portal vein, the vein that carries blood from the intestine to the liver, without liver scarring (cirrhosis). Symptoms of portal hypertension can include fatigue, swelling, itching, jaundice, and belly swelling. Liver function usually stays normal. GARD lists adult as the usual onset.
Signs & symptoms
Symptoms vary from person to person. GARD lists this among the most common:
- Differences in the liver's blood vessels
- High blood pressure in the portal vein (portal hypertension)
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
The cause is not well understood. GARD says the liver's blood vessels may become damaged or inflamed, which limits blood flow to parts of the liver. It is often linked to autoimmune, blood, or immune conditions, repeated infections, or certain medicines or toxins.
Also known as: nodular regenerative hyperplasia of liver; nodular transformation of liver; non-cirrhotic nodulation; noncirrhotic nodulation; partial nodular transformation of liver
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 Nodular regenerative hyperplasia of the liver.
Explore research for Nodular regenerative hyperplasia of the liver
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