Living with Severe combined immunodeficiency due to CORO1A deficiency
A rare inherited immune condition with very low T cells and repeated infections, sometimes with learning or attention differences.
Understanding Severe combined immunodeficiency due to CORO1A deficiency
T cells are very low, B cells are normal, and antibody levels are low. The thymus is present. Repeated infections start in infancy or early childhood. Epstein-Barr virus (EBV) related lymphoma has been reported. Some people have developmental delay, thinking differences, or attention deficit-hyperactivity disorder.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weakened immune function
- Repeated ear, cold, and chest infections
- Long-lasting oral thrush
- Chickenpox-like infection after vaccination
- Attention deficit-hyperactivity disorder
- Global developmental delay
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 CORO1A 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
It is caused by changes in the CORO1A gene. It is autosomal recessive, so a child inherits a changed copy of the gene from each parent.
Also known as: coronin-1a deficiency; immunodeficiency 8; immunodeficiency 8 with lymphoproliferation; immunodeficiency type 8; scid due to coro1a deficiency; scid due to coronin-1a 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 Severe combined immunodeficiency due to CORO1A deficiency.
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