Living with Mast cell activation syndrome
A condition with repeated, severe allergy-like symptoms across the skin, gut, heart, lungs, and nervous system.
Understanding Mast cell activation syndrome
Mast cells are immune cells found throughout the body. In MCAS they mistakenly release too many chemicals. Symptoms can start at any age but usually begin in adulthood. Diagnosis is based on symptoms, an exam, and specific lab tests, and other conditions may need to be ruled out.
Signs & symptoms
GARD doesn't list a separate symptom list, but its summary describes these:
- Belly pain, cramping, and diarrhea
- Flushing and itching
- Wheezing and coughing
- Lightheadedness
- Fast pulse
- Low blood pressure
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
The Mast Cell Disease Society may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: The Mast Cell Disease Society
- 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 The Mast Cell Disease Society and other patient organizations
- 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 the cause of MCAS is unknown. Mast cells mistakenly release too many chemical agents.
Also known as: disorder of mast cell activation; macs; mast cell activation disease; mcad - mast cell activation disorder
Patient organizations
- The Mast Cell Disease SocietyMast cell activation syndrome · United States
- Allergy & Asthma Network Mothers of AsthmaticsMast cell activation syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Mast cell activation syndrome.
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