Living with Hyper-IgM syndrome type 5
A rare immune condition caused by changes in the UNG gene, with repeated infections and swollen lymph nodes.
Understanding Hyper-IgM syndrome type 5
GARD gives a short description. People may have repeated bacterial and respiratory infections, swollen lymph nodes, and weakened immune function. Epididymitis (swelling of a tube near the testicle) is also listed.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Repeated bacterial infections
- Repeated respiratory infections
- Swollen lymph nodes
- Weakened immune function
- Epididymitis
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 UNG 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 UNG gene cause this condition. It is autosomal recessive, so a child inherits a changed copy of the gene from each parent.
Also known as: autosomal recessive hyperimmunoglobulin m syndrome due to ung deficiency; autosomal recessive hyperimmunoglobulin m syndrome due to uracil dna glycosylase deficiency; higm5; hyper-igm immunodeficiency syndrome, type 5; hyper-igm syndrome 5; hyper-igm syndrome caused by mutation in ung
Patient organizations
- Hyper IgM FoundationHyper-IgM syndrome type 5 · United States
- Immune Deficiency FoundationPrimary immunodeficiency · United States
You are more than your diagnosis
Perspectives from people navigating life with Hyper-IgM syndrome type 5.
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