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Living with Kimura disease

A rare, noncancerous, long-lasting condition that swells the tissue under the skin of the head or neck.

Understanding Kimura disease

Kimura disease is a rare, noncancerous, chronic condition that causes swelling of the tissue under the skin of the head or neck.

Masses generally appear in a person's mid-20s, and the disease mainly affects men. It is diagnosed with a surgical biopsy. The cause is unknown.

Signs & symptoms

Symptoms vary from person to person. GARD lists these among the most common:

Masses under the skin of the head or neck
Swollen lymph nodes
High eosinophil count in the blood

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

Diagnosis

Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
See a specialist
Specialists who may be involved include autoimmune and inflammatory disease specialists.
Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.

Care & treatment

Care team: autoimmune and inflammatory disease specialists (rheumatologists)
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

What did my biopsy show?

Which treatments are available if the masses come back?

How often should I be checked?

Quick facts

Symptoms usually startAdult

The cause of the disease is unknown.

Also known as: eosinophilic lymphogranuloma; kimura's disease

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

Source: NIH GARD · Kimura diseaseGARD ID 6835 · 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 Kimura disease.

Explore the Kimura disease blog

Broader resource

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Explore research for Kimura disease

Explore actively recruiting Kimura disease studies with HealthSpark.

HealthSpark

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

Recruiting studies from ClinicalTrials.gov
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Eligibility is confirmed by the study team

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

HealthStoryfor Kimura disease

Create a living journal that talks back

HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Kimura disease experiences more deeply and prepare for better conversations with your doctors and care team.

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