Living with Systemic mast cell disease
A blood condition (systemic mastocytosis) in which mast cells build up and cause tiredness, flushing, belly problems, and allergic reactions.
Understanding Systemic mast cell disease
Signs can appear at any age but usually appear after the teen years. Symptoms often include tiredness, flushing, belly pain, and breathing or blood pressure changes. Many people get raised brown skin patches that sting or itch. Nearly half have severe allergic reactions (anaphylaxis). There are five subtypes, from mild (indolent and smoldering) to severe types.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Extreme tiredness
- Skin flushing and warmth
- Nausea, belly pain, bloating, or diarrhea
- Nasal congestion and shortness of breath
- Low blood pressure and lightheadedness
- Raised, itchy brown skin patches
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
GARD doesn't describe a cause for this condition yet.
Also known as: smcd - systemic mast cell disease; systemic mastocytosis; systemic tissue mast cell disease
Patient organizations
- The Mast Cell Disease SocietySystemic mast cell disease · United States
- Ben's FriendsSystemic mast cell disease · United States
- HealthTree FoundationSystemic mast cell disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Systemic mast cell disease.
Explore research for Systemic mast cell disease
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- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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