Overview
Lymphocytic hypereosinophilic syndrome (L-HES) is a rare blood disorder in which a specific type of white blood cell called eosinophils builds up to very high levels in the blood and tissues. In this particular form, the problem starts with abnormal T-lymphocytes (a type of immune cell) that produce too much of certain chemical signals called cytokines, especially interleukin-5 (IL-5). These signals tell the body to make far too many eosinophils. When eosinophils accumulate in organs such as the skin, lungs, heart, and digestive tract, they can cause significant damage over time. Common symptoms include skin rashes, itching, fatigue, coughing, shortness of breath, abdominal pain, and sometimes swollen lymph nodes. The skin is one of the most frequently affected organs. Over time, if left untreated, the excess eosinophils can damage the heart and other vital organs, which can become life-threatening. Treatment typically involves corticosteroids to lower eosinophil counts, and in many cases additional medications are needed. Because the underlying problem involves abnormal T-cells, L-HES can sometimes progress to T-cell lymphoma, making long-term monitoring essential. Newer targeted therapies, including antibodies that block IL-5, have improved outcomes for many patients. The condition is chronic and usually requires ongoing management by a team of specialists.
Also known as:
Key symptoms:
Skin rashes or eczema-like patchesSevere itchingSwelling under the skin (angioedema)Fatigue and general weaknessCoughing or shortness of breathAbdominal pain or digestive problemsSwollen lymph nodesFeverMuscle or joint painWeight lossHeart problems such as chest pain or irregular heartbeatNumbness or tingling in hands or feetRecurrent infections
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Lymphocytic hypereosinophilic syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Lymphocytic hypereosinophilic syndrome at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for Lymphocytic hypereosinophilic syndrome.
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 Lymphocytic hypereosinophilic syndrome.
Community
No community posts yet. Be the first to share your experience with Lymphocytic hypereosinophilic syndrome.
Start the conversation →Latest news about Lymphocytic hypereosinophilic syndrome
No recent news articles for Lymphocytic hypereosinophilic syndrome.
Follow this condition to be notified when news becomes available.
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 is my current eosinophil level, and what is the target we are aiming for with treatment?,Do I have evidence of organ damage, especially to my heart, and how will you monitor for this?,What type of abnormal T-cells were found, and what does this mean for my risk of developing lymphoma?,What are the side effects of my current medications, and are there ways to reduce my steroid dose over time?,Am I a candidate for mepolizumab or other targeted biologic therapies?,How often will I need blood tests and follow-up visits?,Are there any clinical trials available for lymphocytic hypereosinophilic syndrome that I might be eligible for?
Common questions about Lymphocytic hypereosinophilic syndrome
What is Lymphocytic hypereosinophilic syndrome?
Lymphocytic hypereosinophilic syndrome (L-HES) is a rare blood disorder in which a specific type of white blood cell called eosinophils builds up to very high levels in the blood and tissues. In this particular form, the problem starts with abnormal T-lymphocytes (a type of immune cell) that produce too much of certain chemical signals called cytokines, especially interleukin-5 (IL-5). These signals tell the body to make far too many eosinophils. When eosinophils accumulate in organs such as the skin, lungs, heart, and digestive tract, they can cause significant damage over time. Common sympt
How is Lymphocytic hypereosinophilic syndrome inherited?
Lymphocytic hypereosinophilic syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Lymphocytic hypereosinophilic syndrome typically begin?
Typical onset of Lymphocytic hypereosinophilic syndrome is adult. Age of onset can vary across affected individuals.