Living with Ambras type hypertrichosis universalis congenita
A very rare skin condition present from birth with extra soft hair growth over the whole body, especially on the face, ears, and shoulders.
Understanding Ambras type hypertrichosis universalis congenita
It is a type of hypertrichosis lanuginosa congenita. The extra hair grows everywhere except the palms, soles, and mucous membranes. It is fine, soft, short (vellus) hair, especially on the face, ears, and shoulders. Facial and dental differences may also be present.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. The summary describes extra hair growth.
- Extra fine, soft hair over the body
- Extra hair on the face, ears, and shoulders
- Facial and dental 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
GARD says it has been mapped to the long (q) arm of chromosome 8. It appears to follow an autosomal dominant pattern of inheritance.
Also known as: ambras syndrome; congenital generalized hypertrichosis, ambras type; htc1
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 Ambras type hypertrichosis universalis congenita.
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