Living with Autosomal dominant hypohidrotic ectodermal dysplasia
An inherited condition with thin hair, less sweating, and missing or oddly formed teeth.
Understanding Autosomal dominant hypohidrotic ectodermal dysplasia
The classic features become clear in childhood. Scalp hair is thin, lightly colored, and slow growing. Sweating is greatly reduced, which can lead to overheating until people learn ways to control temperature. Only a few abnormally shaped teeth come in, later than average. Growth and development are otherwise normal. Mild forms have milder features.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Reduced ability to sweat (hypohidrosis)
- Sparse scalp and body hair
- Missing teeth (hypodontia)
- Oddly shaped teeth
- Thin skin
- Nail changes
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 eye disease specialists, genetic specialists, gum, teeth and mouth 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
- Eye disease specialists (ophthalmologists); Genetic specialists (geneticists); Gum, teeth and mouth specialists (odontologists); 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 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: ad-hed; autosomal dominant anhidrotic ectodermal dysplasia; autosomal dominant hypohidrotic ectodermal dysplasia syndrome; hypohidrotic ectodermal dysplasia, autosomal dominant
Patient organizations
- National Foundation for Ectodermal DysplasiasAutosomal dominant hypohidrotic ectodermal dysplasia · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Autosomal dominant hypohidrotic ectodermal dysplasia.
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