Living with Complement component 5 deficiency
An inherited condition that raises the chance of repeated Neisseria infections such as meningococcal disease.
Understanding Complement component 5 deficiency
It happens when a person has two copies of the changed gene, or one copy each of two different changed genes. The C5 gene is on chromosome 9q33. People can be more prone to infections caused by Neisseria bacteria.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Repeated meningococcal (Neisseria) infections
- Low C5 level in the blood
- Reduced CH50 activity (a complement test)
- Seborrheic dermatitis
- Hard-to-treat diarrhea
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
Your doctor may refer you to a specialist who knows rare conditions.
- 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
- A doctor familiar with rare conditions, plus specialists as needed
- 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
It is caused by changes in the C5 gene. It is autosomal recessive, so a child inherits a changed copy of the gene from each parent.
Also known as: c5 complement deficiency; c5 deficiency; complement 5 dysfunction; complement deficiency caused by mutation in c5
Patient organizations
- Immune Deficiency FoundationComplement component 5 deficiency · United States
You are more than your diagnosis
Perspectives from people navigating life with Complement component 5 deficiency.
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