Living with Cutaneous mastocytosis
A condition in which too many mast cells collect in the skin, with several forms that vary in severity.
Understanding Cutaneous mastocytosis
There are three main forms: maculopapular (also called urticaria pigmentosa), solitary mastocytoma, and diffuse cutaneous mastocytosis. An extremely rare form is called telangiectasia macularis eruptiva perstans. Signs, symptoms, and severity vary by type. It often starts in childhood.
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, cancer specialists and skin, hair, and nail 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); Skin, hair, and nail specialists (dermatologists)
- 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 cases are caused by changes that are not inherited and not passed on. Rarely it affects more than one family member and is inherited in an autosomal dominant way (one changed copy is enough).
Also known as: cm; cutaneous (skin) mastocytosis; cutaneous mastocytosis (disease); mastocytosis, cutaneous; mastocytosis, maculopapular cutaneous; mastocytosis, systemic, somatic
Patient organizations
- The Mast Cell Disease SocietyCutaneous mastocytosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Cutaneous mastocytosis.
Explore research for Cutaneous mastocytosis
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