Living with Hypereosinophilic syndrome
A rare group of conditions with ongoing high levels of eosinophils (a type of white blood cell) that affect organs.
Understanding Hypereosinophilic syndrome
Eosinophils are a type of white blood cell. Any organ system can be involved. The heart, central nervous system, skin, and breathing tract are most often affected. Signs vary a lot depending on which body parts are affected. It was once thought to have no known cause, but a cause can now be found in about a quarter of cases. It can occur at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD says they vary widely depending on which organs are affected:
- Heart involvement
- Nervous system involvement
- Skin involvement
- Breathing tract involvement
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include blood and bone marrow specialists, cancer specialists and heart and blood vessel specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
American Partnership For Eosinophilic Disorders and Children's Cardiomyopathy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Cancer specialists (oncologists); Heart and blood vessel specialists (cardiologists)
- Expert care
- Expert lists: American Partnership For Eosinophilic Disorders, Children's Cardiomyopathy Foundation
- 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 American Partnership For Eosinophilic Disorders and other patient organizations
- 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
Quick facts
In the past the cause was thought to be unknown. Recent testing has found a cause in about a quarter of cases.
Also known as: eosinophilic leukocytosis; hes; hes - hypereosinophilic syndrome; hypereosinophilic disease; hypereosinophilic disorder
Patient organizations
- American Partnership For Eosinophilic DisordersHypereosinophilic syndrome · United States
- Blood Cancer UnitedBlood or bone marrow disease · United States
- HealthTree FoundationBlood or bone marrow disease · United States
- Children's Cardiomyopathy FoundationCardiomyopathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Hypereosinophilic syndrome.
Explore research for Hypereosinophilic syndrome
Explore actively recruiting Hypereosinophilic syndrome studies with HealthSpark.
Find actively recruiting studies for Hypereosinophilic syndrome 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.
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