Living with Autosomal agammaglobulinemia
A rare immune condition with very low antibody levels, causing frequent bacterial infections starting around 6 months of age.
Understanding Autosomal agammaglobulinemia
People generally begin having frequent, repeated bacterial infections from about 6 months of age. These include lung infections, ear infections, pink eye, sinus infections, skin infections, and infections with chronic diarrhea.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Repeated infections
- Ear and sinus infections
- Lung infections with cough
- Skin infections and rashes
- Diarrhea and poor weight gain
- Fever and tiredness
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
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: 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 Immune Deficiency Foundation
- 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
GARD says it can be caused by changes in many genes, including IGHM, IGLL1, CD79A, CD79B, BLNK, PIK3R1, and TCF3. It is usually autosomal recessive, though some families have a dominant pattern.
Also known as: agammaglobulinemia, non-bruton type; agm; agm1
Patient organizations
- Immune Deficiency FoundationPrimary immunodeficiency · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Autosomal agammaglobulinemia.
Explore research for Autosomal agammaglobulinemia
Explore actively recruiting Autosomal agammaglobulinemia studies with HealthSpark.
Find actively recruiting studies for Autosomal agammaglobulinemia 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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