Living with Hyper-IgE syndrome
A rare immune condition that causes high IgE levels, skin inflammation, and repeated skin and lung infections.
Understanding Hyper-IgE syndrome
It causes high levels of immunoglobulin E (IgE), a type of antibody in the blood. People may have skin inflammation (dermatitis) and repeated infections of the skin and lungs.
Signs & symptoms
Symptoms vary from person to person. GARD's summary describes:
- Skin inflammation (dermatitis)
- Repeated skin infections
- Repeated lung infections
- High IgE levels in the blood
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 allergy and immune system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association and Immune Deficiency Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Allergy and immune system specialists (allergists / immunologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Autoimmune Association, Immune Deficiency 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 Autoimmune Association 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
Changes in genes (also called variants) cause this condition. GARD doesn't list a specific gene or inheritance pattern.
Also known as: hies; hies - hyperimmunoglobulin e syndrome; hyper-ige recurrent infection syndrome; hyperimmunoglobulin e syndrome
Patient organizations
- Autoimmune AssociationHyper-IgE syndrome · United States
- Immune Deficiency FoundationPrimary immunodeficiency · United States
You are more than your diagnosis
Perspectives from people navigating life with Hyper-IgE syndrome.
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- Eligibility is confirmed by the study team
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