Overview
Idiopathic peliosis hepatis is a rare liver condition where unusual blood-filled cavities, or cysts, form inside the liver tissue. The word 'peliosis' comes from the Greek word for 'bruise,' which describes the purplish appearance of these blood-filled spaces. 'Idiopathic' means that no clear underlying cause can be found — in other cases, peliosis hepatis can be linked to certain medications, infections like bartonella, or other diseases, but in the idiopathic form, the trigger remains unknown. These blood-filled cavities can range from tiny spots to larger pockets spread throughout the liver. In many people, the condition causes no symptoms at all and is discovered by accident during imaging done for another reason. When symptoms do occur, they may include abdominal pain, an enlarged liver, nausea, or signs of liver dysfunction. The most serious risk is spontaneous rupture of one of these cavities, which can cause life-threatening internal bleeding. Treatment depends on how severe the condition is. Mild cases may only need monitoring. More serious cases may require stopping any suspected triggering medications, treating underlying infections, or in rare situations, surgery or liver transplantation. Because this is a rare and poorly understood condition, management is largely individualized and guided by specialist experience.
Also known as:
Key symptoms:
Pain or discomfort in the upper right abdomenEnlarged liver (hepatomegaly)Nausea or vomitingUnexplained weight lossFatigue and general weaknessYellowing of the skin or eyes (jaundice)Abnormal liver blood test resultsFeeling of fullness or bloating in the bellyFever in some casesSudden severe abdominal pain if a cyst ruptures
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Idiopathic peliosis hepatis.
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Specialists
View all specialists →No specialists are currently listed for Idiopathic peliosis hepatis.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Idiopathic peliosis hepatis.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What is causing my peliosis hepatis, and have all possible triggers been ruled out?,How often do I need imaging or blood tests to monitor my liver?,What symptoms should prompt me to go to the emergency room immediately?,Are there any medications, supplements, or foods I should avoid?,What is the risk that my condition will worsen, and what would that look like?,Should I be referred to a liver transplant center for evaluation, even as a precaution?,Are there any clinical trials or research studies I could participate in?
Common questions about Idiopathic peliosis hepatis
What is Idiopathic peliosis hepatis?
Idiopathic peliosis hepatis is a rare liver condition where unusual blood-filled cavities, or cysts, form inside the liver tissue. The word 'peliosis' comes from the Greek word for 'bruise,' which describes the purplish appearance of these blood-filled spaces. 'Idiopathic' means that no clear underlying cause can be found — in other cases, peliosis hepatis can be linked to certain medications, infections like bartonella, or other diseases, but in the idiopathic form, the trigger remains unknown. These blood-filled cavities can range from tiny spots to larger pockets spread throughout the live
How is Idiopathic peliosis hepatis inherited?
Idiopathic peliosis hepatis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Idiopathic peliosis hepatis typically begin?
Typical onset of Idiopathic peliosis hepatis is adult. Age of onset can vary across affected individuals.