Living with Pure hair and nail ectodermal dysplasia
A rare inherited condition with very sparse hair and abnormal nails, present from birth or infancy.
Understanding Pure hair and nail ectodermal dysplasia
Hair loss is mainly on the scalp, but eyelashes and eyebrows may also be affected. GARD lists onset in the newborn or infant period.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. The summary describes these features:
- Abnormal nails (onychodystrophy)
- Severely thin hair (hypotrichosis), mainly on the scalp
- Sparse eyelashes and eyebrows in some people
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 gene changes cause this condition. It lists autosomal dominant and autosomal recessive inheritance, and says the summary describes autosomal dominant transmission.
Also known as: hair-nail ectodermal dysplasia; hned; phned
Patient organizations
- National Foundation for Ectodermal DysplasiasPure hair and nail ectodermal dysplasia · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Pure hair and nail ectodermal dysplasia.
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