Living with Steatocystoma multiplex
A skin condition with many harmless oil-filled cysts, usually on the torso, neck, arms, and legs.
Understanding Steatocystoma multiplex
The cysts are filled with sebum, the oily substance that lubricates skin and hair. They usually first appear in the teen years, most often on the torso, neck, upper arms, and upper legs. They are usually the only sign, though some people have mild differences in the teeth or nails.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Many noncancerous skin cysts (steatocystomas)
- Cysts on the torso, neck, arms, and legs
- Mild tooth differences (some people)
- Mild nail differences (some people)
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 genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in KRT17 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Children's Skin Disease Foundation
- 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
Changes in the KRT17 gene cause this condition. It is autosomal dominant, meaning one changed copy of the gene can cause it.
Also known as: disseminated sebocystomatosis; hereditary epidermal polycystic disease; sebocystomatosis
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Steatocystoma multiplex.
Explore research for Steatocystoma multiplex
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