Living with Idiopathic CD4 lymphocytopenia
A rare immune condition with low levels of CD4+ T cells that makes infections more likely.
Understanding Idiopathic CD4 lymphocytopenia
The low levels can't be explained by other causes, including HIV. CD4+ T cells help fight bacteria and viruses and help other immune cells work together, so the body is more prone to infection. Some people have no symptoms.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Low T cell and CD4+ T cell counts
- Repeated colds and sinus infections
- Repeated pneumonia
- Repeated middle ear infections
- Repeated shingles
- Nasal polyps
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 UNC119 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
A few people carry specific genetic changes, such as in the UNC119 gene, and it may be inherited in an autosomal dominant pattern. For most people, the underlying cause is not known.
Also known as: idiopathic cd4 lymphopenia; immunodeficiency 13; immunodeficiency type 13
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 Idiopathic CD4 lymphocytopenia.
Explore research for Idiopathic CD4 lymphocytopenia
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