Living with Nevus comedonicus syndrome
A rare skin condition with groups of plugged hair follicles, usually on the face and neck, that appears in childhood.
Understanding Nevus comedonicus syndrome
The patches look like a honeycomb of plugged pores. They can be on one or both sides of the body, in lines, or in segments. They may look like acne, or form cysts, bumps, pustules, and abscesses. In most people the condition develops in the first ten years of life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blackhead-like plugs in skin pores (comedones)
- Benign skin overgrowths (hamartoma)
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 cancer specialists, genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in NEK9 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Foundation for Ichthyosis and Related Skin Types may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Foundation for Ichthyosis and Related Skin Types
- 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 Foundation for Ichthyosis and Related Skin Types 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 lists the NEK9 gene, saying changes in genes cause this condition. It doesn't describe how it is inherited.
Also known as: acne nevus; acneiform nevus; comedo nevus; follicular nevus; nevus comedonicus; nevus comedonicus, somatic
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesNevus comedonicus syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Nevus comedonicus syndrome.
Explore research for Nevus comedonicus syndrome
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- 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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