Living with Atrichia with papular lesions
A rare inherited condition with permanent loss of all body hair in infancy, followed by small skin bumps.
Understanding Atrichia with papular lesions
Hair loss happens in the newborn period on all hair-bearing areas and is not reversible. Later, small bumps (papules) develop across the body, mostly on the face and the outer surfaces of the arms and legs.
Signs & symptoms
GARD doesn't list a symptom list for this condition, but its summary describes these features:
- Permanent hair loss starting in the newborn period
- Hair loss over the whole body
- Small skin bumps (papules) that develop later
- Bumps mostly on the face and outer arms and legs
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 HR 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
National Alopecia Areata Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: National Alopecia Areata Foundation
- 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 National Alopecia Areata Foundation 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 says changes in the HR gene cause this condition. It is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: apl; papular atrichia
Patient organizations
- National Alopecia Areata FoundationAtrichia with papular lesions · United States
- Children's Skin Disease FoundationSkin diseases · United States
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