Living with Diffuse cutaneous mastocytosis
A rare skin condition with widespread redness, blistering, and a buildup of mast cells in the skin.
Understanding Diffuse cutaneous mastocytosis
It causes redness over most of the body, varying amounts of blistering, and skin with an orange-peel look. At least two variants are known: one with extreme blistering and one with thickened, infiltrated skin. GARD lists onset in the newborn or infant period.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blistering of the skin
- Widespread skin redness
- Flushing
- Diarrhea
- Headache
- Severe allergic reaction (anaphylaxis)
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
GARD doesn't describe a cause for this condition yet. It describes a buildup of mast cells in the skin.
Also known as: dcm; diffuse cutaneous maculopapulous mastocytosis
Patient organizations
- The Mast Cell Disease SocietyDiffuse cutaneous mastocytosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Diffuse cutaneous mastocytosis.
Explore research for Diffuse cutaneous mastocytosis
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- Eligibility is confirmed by the study team
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