Living with Immunodeficiency due to a late component of complement deficiency
An inherited immune condition with a missing complement protein that often leads to repeated meningitis.
Understanding Immunodeficiency due to a late component of complement deficiency
It is typically marked by meningitis (infection around the brain and spinal cord) from repeated meningococcal infections. GARD says the outlook is generally favorable.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes:
- Meningitis from meningococcal infection
- Repeated meningococcal infections
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 describes it as due to a problem in one of the late complement proteins. It is inherited in an autosomal recessive pattern, meaning a child inherits a changed copy of the gene from each parent.
Also known as: deficiency of complement of terminal pathway; immunodeficiency due to a c5 to c9 component complement deficiency; immunodeficiency due to c5 to c9 component complement deficiency; terminal complement pathway deficiency; terminal component deficiency
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 due to a late component of complement deficiency.
Explore research for Immunodeficiency due to a late component of complement deficiency
Explore actively recruiting Immunodeficiency due to a late component of complement deficiency studies with HealthSpark.
Find actively recruiting studies for Immunodeficiency due to a late component of complement deficiency with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Immunodeficiency due to a late component of complement deficiency studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Immunodeficiency due to a late component of complement deficiency
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Immunodeficiency due to a late component of complement deficiency experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.