Living with Hyper-IgM syndrome type 2
A rare immune condition in which the body can't switch antibody types, leading to repeated infections and swollen lymph nodes.
Understanding Hyper-IgM syndrome type 2
Antibodies are proteins that protect against infection. Normally the body can switch between types of antibodies to fight different infections. This disease prevents that. It can also cause swollen lymph nodes.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Repeated bacterial infections
- Repeated respiratory infections
- Repeated stomach and gut infections
- Swollen lymph nodes
- Weakened immune function
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.
- 3Consider genetic testing
Changes in AICDA are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Hyper IgM Foundation 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: Hyper IgM Foundation, 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 Hyper IgM Foundation 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 the AICDA gene cause this condition. It is autosomal recessive, so a child inherits a changed copy of the gene from each parent.
Also known as: activation-induced cytidine deaminase deficiency; aicda hyper-igm syndrome; aid deficiency; higm2; hyper-igm immunodeficiency syndrome, type 2; hyper-igm syndrome caused by mutation in aicda
Patient organizations
- Hyper IgM FoundationHyper-IgM syndrome type 2 · United States
- Immune Deficiency FoundationPrimary immunodeficiency · United States
You are more than your diagnosis
Perspectives from people navigating life with Hyper-IgM syndrome type 2.
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