Living with Hypertrichosis lanuginosa congenita
A rare skin condition present from birth with fine, soft hair covering the body.
Understanding Hypertrichosis lanuginosa congenita
The hair is very fine, soft, and unpigmented (called lanugo). It covers the whole body except the palms, soles, and mucous membranes. It can grow 3 to 5 cm long. It appears to follow an autosomal dominant pattern.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fine hair over the body
- Thick eyebrows
- Delayed tooth eruption
- Hearing loss
- Skin pigment differences
- Tooth differences
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
National Foundation for Ectodermal Dysplasias 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 Foundation for Ectodermal Dysplasias
- 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 Foundation for Ectodermal Dysplasias 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
Changes in genes (also called variants) cause this condition. It is autosomal dominant, meaning one changed copy of the gene can be enough to cause it.
Also known as: congenital hypertrichosis lanuginosa; hypertrichosis universalis; hypertrichosis universalis congenita
Patient organizations
- National Foundation for Ectodermal DysplasiasEctodermal dysplasias · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Hypertrichosis lanuginosa congenita.
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