Living with Mastocytosis
A condition in which too many mast cells (immune cells) build up in the skin or organs.
Understanding Mastocytosis
Mast cells are white blood cells that help protect against infection and cause inflammation. Symptoms depend on which parts of the body are affected. Cutaneous mastocytosis affects only the skin and is more common in children. Systemic mastocytosis affects more than one body part and is more common in adults.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
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 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
It is usually caused by changes in the KIT gene. Most are somatic changes, which occur only in certain parts of the body and are not inherited. Rarely it affects more than one person in a family.
Also known as: mast cell disease; mast cell hyperplasia
Patient organizations
- The Mast Cell Disease SocietyMastocytosis · United States
- Allergy & Asthma Network Mothers of AsthmaticsMastocytosis · United States
- Ben's FriendsMastocytosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Mastocytosis.
Explore research for Mastocytosis
Explore actively recruiting Mastocytosis studies with HealthSpark.
Find actively recruiting studies for Mastocytosis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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