Living with Autoimmune lymphoproliferative syndrome type 4
A rare genetic condition with extra immune cells, low blood cell counts from autoimmunity, and an enlarged liver and spleen.
Understanding Autoimmune lymphoproliferative syndrome type 4
Features include a high number of certain white blood cells (monocytosis), low blood counts from autoimmunity, growth of immune tissue (lymphoproliferation), an enlarged liver and spleen, and high levels of antibodies. It starts in infancy or childhood.
Signs & symptoms
GARD lists these among the less common symptoms:
- Repeated infections
- Repeated respiratory infections
- Low platelets from autoimmunity (thrombocytopenia)
- Autoimmune conditions
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, blood and bone marrow specialists, cancer 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); Blood and bone marrow specialists (hematologists); Cancer specialists (oncologists); 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 says changes in genes (also called variants) cause this condition. It is autosomal dominant, meaning one changed copy of the gene can be enough to cause it.
Also known as: alps type 4; alps type iv; alps4; autoimmune lymphoproliferative syndrome caused by mutation in nras; autoimmune lymphoproliferative syndrome type iv; autoimmune lymphoproliferative syndrome, type iv
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 Autoimmune lymphoproliferative syndrome type 4.
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