Overview
Cystic echinococcosis (CE), also known as hydatid disease or hydatidosis, is a parasitic infection caused by the larval stage of a tapeworm called Echinococcus granulosus. Humans become infected by accidentally swallowing tiny tapeworm eggs, usually through contact with infected dogs or contaminated soil, water, or food. The eggs hatch in the gut and travel through the bloodstream to form fluid-filled cysts, most often in the liver or lungs, but sometimes in other organs like the brain, kidneys, or bones. These cysts grow slowly over many years, often without causing any symptoms at first. As they get larger, they can press on nearby organs and cause pain, discomfort, or other problems depending on where they are located. In the liver, this may cause upper belly pain or a feeling of fullness. In the lungs, it can cause coughing, chest pain, or shortness of breath. If a cyst ruptures, it can trigger a severe allergic reaction called anaphylaxis, which is a medical emergency. Treatment depends on the size, location, and stage of the cysts. Options include surgery, a minimally invasive procedure called PAIR (puncture, aspiration, injection, re-aspiration), and antiparasitic medications such as albendazole. Some stable, inactive cysts may be monitored without immediate treatment. With proper care, many people do well, but the disease can be serious if cysts rupture or are left untreated for a long time.
Also known as:
Key symptoms:
Dull aching pain or pressure in the upper right belly (liver cysts)Feeling of fullness or a lump in the abdomenCough that does not go away (lung cysts)Chest pain or difficulty breathingNausea and vomitingYellowing of the skin or eyes (jaundice) if bile ducts are blockedFatigue and general tirednessFever, especially if a cyst becomes infectedSevere allergic reaction (hives, swelling, difficulty breathing) if a cyst rupturesBone pain or fractures if cysts form in bonesHeadaches or neurological symptoms if cysts form in the brainSwollen belly or visible abdominal mass in advanced cases
Clinical phenotype terms (41)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
3 eventsFondazione IRCCS Policlinico San Matteo di Pavia
Republican Specialized Scientific and Practical Medical Center of Surgery Named After V. Vakhidov
Republican Specialized Scientific and Practical Medical Center of Surgery Named After V. Vakhidov — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Cystic echinococcosis.
3 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 Cystic echinococcosis.
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
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 stage is my cyst, and does it need treatment right away or can it be monitored?,What are the risks and benefits of surgery versus the PAIR procedure versus medication alone for my specific situation?,How long will I need to take albendazole, and what side effects should I watch for?,How often do I need follow-up scans, and what signs of change should prompt me to come in sooner?,What is the risk that my cyst could rupture, and what should I do if I think that has happened?,Is there a risk that other family members who live with me could be infected?,What lifestyle changes or precautions should I take to avoid getting reinfected?
Common questions about Cystic echinococcosis
What is Cystic echinococcosis?
Cystic echinococcosis (CE), also known as hydatid disease or hydatidosis, is a parasitic infection caused by the larval stage of a tapeworm called Echinococcus granulosus. Humans become infected by accidentally swallowing tiny tapeworm eggs, usually through contact with infected dogs or contaminated soil, water, or food. The eggs hatch in the gut and travel through the bloodstream to form fluid-filled cysts, most often in the liver or lungs, but sometimes in other organs like the brain, kidneys, or bones. These cysts grow slowly over many years, often without causing any symptoms at first. As
How is Cystic echinococcosis inherited?
Cystic echinococcosis follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for Cystic echinococcosis?
Yes — 3 recruiting clinical trials are currently listed for Cystic echinococcosis on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Cystic echinococcosis?
18 specialists and care centers treating Cystic echinococcosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.