Hepatoportal sclerosis

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Overview

Hepatoportal sclerosis (HPS) is a rare liver condition also known as idiopathic non-cirrhotic portal hypertension (INCPH), obliterative portal venopathy, or non-cirrhotic portal fibrosis. In this disease, the small blood vessels inside the liver — especially the tiny branches of the portal vein — become scarred and narrowed over time. This raises the blood pressure in the portal vein, the large vessel that carries blood from the gut to the liver. Importantly, the liver itself does not become cirrhotic (severely scarred) the way it does in common liver diseases like alcoholic liver disease or hepatitis. Because blood pressure builds up in the portal system, the body tries to reroute blood through other vessels. This leads to enlarged veins in the esophagus (called varices), an enlarged spleen, and a buildup of fluid in the abdomen (ascites). People may also develop low blood counts because the enlarged spleen traps blood cells. Fatigue, abdominal discomfort, and easy bruising are common early complaints. Treatment focuses on managing the complications of high portal blood pressure rather than curing the underlying problem. Medications called beta-blockers help reduce the risk of bleeding from varices. Procedures like endoscopic banding can treat varices directly. In severe cases, a procedure called TIPS (transjugular intrahepatic portosystemic shunt) or even liver transplantation may be considered. With careful monitoring and treatment, many people with HPS can live for many years.

Also known as:

Key symptoms:

Swollen or enlarged spleen (splenomegaly)Enlarged veins in the esophagus or stomach (varices) that can bleedVomiting blood or passing black, tarry stools due to variceal bleedingBuildup of fluid in the abdomen (ascites)Fatigue and low energyEasy bruising or bleedingLow red blood cell count (anemia)Low white blood cell and platelet countsAbdominal discomfort or fullnessYellowing of the skin or eyes (jaundice) — less common than in cirrhosisSwelling in the legs (edema)

Clinical phenotype terms (30)— hover any for plain English
Abnormal liver parenchyma morphologyHP:0030146Gastric varixHP:0030169Intrahepatic portal vein sclerosisHP:0031015Periportal fibrosisHP:0001405Hepatic encephalopathyHP:0002480Nodular regenerative hyperplasia of liverHP:0011954Anticardiolipin IgG antibody positivityHP:0020136Anticardiolipin IgM antibody positivityHP:0020137Portal vein thrombosisHP:0030242
Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Hepatoportal sclerosis.

View clinical trials →

No actively recruiting trials found for Hepatoportal sclerosis at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Hepatoportal sclerosis community →

Specialists

1 foundView all specialists →
GR
Guilherme FM Rezende
Specialist
PI on 1 active trial

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Hepatoportal sclerosis.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Hepatoportal sclerosis

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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 hepatoportal sclerosis — is there an underlying condition or medication that triggered it?,Do I have varices, and what is the best plan to prevent them from bleeding?,How often do I need endoscopy and imaging to monitor my condition?,Should I be on a beta-blocker, and what side effects should I watch for?,What dietary changes do I need to make, especially regarding salt and alcohol?,At what point would you consider a TIPS procedure or liver transplant evaluation?,Are there any clinical trials or new treatments I should know about?

Common questions about Hepatoportal sclerosis

What is Hepatoportal sclerosis?

Hepatoportal sclerosis (HPS) is a rare liver condition also known as idiopathic non-cirrhotic portal hypertension (INCPH), obliterative portal venopathy, or non-cirrhotic portal fibrosis. In this disease, the small blood vessels inside the liver — especially the tiny branches of the portal vein — become scarred and narrowed over time. This raises the blood pressure in the portal vein, the large vessel that carries blood from the gut to the liver. Importantly, the liver itself does not become cirrhotic (severely scarred) the way it does in common liver diseases like alcoholic liver disease or h

How is Hepatoportal sclerosis inherited?

Hepatoportal sclerosis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Hepatoportal sclerosis typically begin?

Typical onset of Hepatoportal sclerosis is adult. Age of onset can vary across affected individuals.

Which specialists treat Hepatoportal sclerosis?

1 specialists and care centers treating Hepatoportal sclerosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.