Overview
Kimura disease is a rare, long-lasting inflammatory condition that mainly affects the soft tissues of the head and neck. It is also sometimes called eosinophilic lymphogranuloma or angiolymphoid hyperplasia with eosinophilia (though some doctors consider these separate conditions). The disease causes painless lumps or swellings, usually around the ear, jaw, or neck, along with swollen lymph nodes. It is not a cancer, but it can look like one on imaging, which is why getting the right diagnosis matters so much. The condition involves an unusual immune system response that leads to a buildup of certain white blood cells called eosinophils in the affected tissues. Blood tests often show high levels of eosinophils and an antibody called IgE. The kidneys can also be affected in some people, leading to a condition called nephrotic syndrome, where protein leaks into the urine. Treatment options include surgical removal of the lumps, steroid medicines, and radiation therapy. Some people also respond to medicines that calm the immune system. Unfortunately, the disease tends to come back even after treatment, so long-term follow-up is important. With proper care, most people live normal lifespans, though managing flare-ups can be challenging.
Also known as:
Key symptoms:
Painless swelling or lump near the ear, jaw, or neckSwollen lymph nodes in the head and neck areaItchy skin over the swollen areaHigh levels of eosinophils (a type of white blood cell) in the bloodHigh IgE antibody levels in the bloodPuffiness or swelling in the faceProtein in the urine (a sign of kidney involvement)Swelling in the legs or ankles if kidneys are affectedSkin changes such as redness or thickening over lumpsRecurring lumps even after treatment
Clinical phenotype terms (5)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
1 eventShandong University
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Kimura disease.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Kimura disease at this time.
New trials open frequently. Follow this disease to get notified.
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 Kimura disease.
Community
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Start the conversation →Latest news about Kimura disease
Disease timeline:
New recruiting trial: AI-assisted White Light Endoscopy to Identify the Kimura-Takemoto Classification of Atrophic Gastritis
A new clinical trial is recruiting patients for Kimura disease
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 treatment do you recommend for my specific case, and why?,How likely is it that my lumps will come back after treatment?,Do I need to have my kidneys checked, and how often?,Are there any clinical trials or newer treatments I should know about?,What warning signs should make me call you or go to the emergency room?,Will I need to take medicines long-term, and what are the risks of those medicines?,Should I see any other specialists as part of my care?
Common questions about Kimura disease
What is Kimura disease?
Kimura disease is a rare, long-lasting inflammatory condition that mainly affects the soft tissues of the head and neck. It is also sometimes called eosinophilic lymphogranuloma or angiolymphoid hyperplasia with eosinophilia (though some doctors consider these separate conditions). The disease causes painless lumps or swellings, usually around the ear, jaw, or neck, along with swollen lymph nodes. It is not a cancer, but it can look like one on imaging, which is why getting the right diagnosis matters so much. The condition involves an unusual immune system response that leads to a buildup of
How is Kimura disease inherited?
Kimura disease follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Kimura disease typically begin?
Typical onset of Kimura disease is adult. Age of onset can vary across affected individuals.
Which specialists treat Kimura disease?
15 specialists and care centers treating Kimura disease are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.