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Living with Distomatosis

A group of rare parasitic infections caused by flukes (flatworms) that can affect the liver, intestines, or lungs.

Understanding Distomatosis

Distomatosis is a group of rare parasitic diseases caused by infection with flukes, a type of flatworm.

The group includes infection with liver flukes (clonorchiasis), intestinal flukes (fasciolopsiasis), and lung flukes (paragonimiasis). Symptoms depend on which organ is affected and can range from mild to more serious. Some people have no symptoms at all. It can happen at any time in life.

Signs & symptoms

GARD doesn't list specific symptoms for this condition. Its summary says symptoms depend on the organ affected:

  • Symptoms depend on the affected organ
  • Severity varies
  • Some people have no symptoms

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Your doctor may refer you to a specialist who knows rare conditions.

  3. Ask which tests can help

    Your care team will decide which exams and tests can confirm the diagnosis.

Care & treatment

Care team
A doctor familiar with rare conditions, plus specialists as needed
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
Bring these questions to your next doctor visit
Which type of fluke infection do I have, and which organ is affected?
What tests can confirm the infection?
How can the infection be treated and prevented?

Quick facts

Symptoms usually startany time in life

The condition is caused by infection with flukes. GARD groups it into liver fluke, intestinal fluke, and lung fluke infections.

Infectious

Also known as: disease due to trematoda; distomiasis; fluke disease; fluke infection; infection by trematode; trematode infection

Patient organizations

Rare-disease groups that can help

Source: NIH GARD · DistomatosisGARD ID 1891 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Distomatosis.

Explore the Distomatosis blog

Explore research for Distomatosis

Explore actively recruiting Distomatosis studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Distomatosis with HealthSpark. Share your city to explore research near you.

  • Recruiting studies from ClinicalTrials.gov
  • Share your city to look for research near you
  • Eligibility is confirmed by the study team

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I can help you find recruiting Distomatosis studies. Enter a ZIP code, address or city below and I'll look within 50 miles.

Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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