Living with Monoclonal mast cell activation syndrome
A rare immune condition with repeated episodes of allergy-like symptoms, flushing, cramping, wheezing, and fainting.
Understanding Monoclonal mast cell activation syndrome
Episodes can include flushing, stomach and intestinal cramping, diarrhea, wheezing, fatigue, and a short loss of consciousness from a drop in blood pressure. It is very similar to systemic mastocytosis but without itchy skin patches. Triggers may include eating, exertion, environmental conditions, emotional stress, or insect stings. It can start at any time in life.
Signs & symptoms
GARD doesn't list a set of most common symptoms for this condition. Its summary describes these features:
- Repeated allergy-like episodes
- Flushing
- Stomach and intestinal cramping and diarrhea
- Wheezing
- Fatigue
- Fainting from a fall in 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
Specialists who may be involved include blood and bone marrow specialists and cancer specialists.
- 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
- Blood and bone marrow specialists (hematologists); Cancer specialists (oncologists)
- 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
- 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
This condition is caused by a very small change in the KIT gene, which leads to a defect in mast cells.
Also known as: monoclonal mcad; monoclonal mcad (mast cell activation disorder); primary mast cell activation syndrome; primary mcas
Patient organizations
- The Mast Cell Disease SocietyMonoclonal mast cell activation syndrome · United States
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