Living with Immunodeficiency with factor H anomaly
A rare genetic immune condition with repeated, often severe infections, kidney problems, and sometimes autoimmune disease.
Understanding Immunodeficiency with factor H anomaly
Infections are usually severe and include ear infections, bronchitis, meningitis, and blood infection (septicemia). Kidney and autoimmune problems can include blood or protein in the urine, nephrotic syndrome, and lupus. Lab tests show low factor H and other low complement proteins.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes:
- Repeated, often severe infections
- Ear infections and bronchitis
- Meningitis or blood infection
- Blood or protein in the urine
- Asthma
- Lupus (systemic lupus erythematosus)
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 CFH 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
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
Changes in the CFH gene cause this condition. It can be inherited in an autosomal dominant or autosomal recessive pattern.
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 Immunodeficiency with factor H anomaly.
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