Living with Macrophage activation syndrome
A serious immune complication of rheumatic disease, with fever, low blood counts, and liver problems.
Understanding Macrophage activation syndrome
It involves too much activation of immune cells called T lymphocytes and macrophages. GARD describes fever, low blood cell counts (pancytopenia), reduced liver function, blood clotting problems, and nervous system symptoms. It can start anywhere from childhood to adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fever
- Swollen lymph nodes
- Enlarged spleen
- Low red blood cells (anemia)
- Low platelet count (thrombocytopenia)
- Decreased liver function
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 autoimmune and inflammatory disease specialists and allergy and immune system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Allergy and immune system specialists (allergists / immunologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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 caused by overactivation and uncontrolled growth of immune cells (T lymphocytes and macrophages). It occurs as a complication of rheumatic disease. GARD does not list a gene or inheritance pattern.
Also known as: hemophagocytic lymphohistiocytosis with rheumatologic disease; mas; reactive hemophagocytic lymphohistiocytosis
Patient organizations
Rare-disease groups that can help
- 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 Macrophage activation syndrome.
Explore research for Macrophage activation syndrome
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- Eligibility is confirmed by the study team
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