Living with Atrophoderma vermiculatum
A rare genetic skin condition that causes honeycomb-like scarring on the cheeks and forehead, starting in childhood.
Understanding Atrophoderma vermiculatum
It starts in childhood with rough bumps around hair follicles. They slowly progress to honeycomb-like pitting on the cheeks, in front of the ears, and on the forehead. It can less often affect the upper lip, ears, or limbs. Other features include facial redness, small white bumps (milia), and plugged follicles.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Rough bumps around hair follicles
- Honeycomb-like sunken scarring (atrophy)
- Skin pits, including near the ears
- Thickened skin bumps (hyperkeratotic papules)
- Changes on the cheeks and chin
- Underdeveloped hair follicles and oil glands
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 LRP1 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
GARD says changes in the LRP1 gene cause this condition. It is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: acne vermoulante; atrophoderma vermiculata; atrophodermia reticulata symmetrica faciei; atrophodermia vermiculata; ava; folliculitis ulerythematosa reticulata
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 Atrophoderma vermiculatum.
Explore research for Atrophoderma vermiculatum
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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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