Living with Ectodermal dysplasia
A group of more than 180 inherited conditions that affect the skin, hair, teeth, nails, and sweat glands.
Understanding Ectodermal dysplasia
Symptoms range from mild to severe. They can include tooth differences, brittle, sparse, or absent hair, nail differences, an inability to sweat (hypohidrosis), and various skin problems. Different types are caused by changes in different genes and are inherited in different ways. Signs show up in the newborn and infant years.
Signs & symptoms
Symptoms vary from person to person. GARD's summary describes these among the common features:
- Tooth differences
- Brittle, sparse, or absent hair
- Nail differences
- Inability to sweat (hypohidrosis)
- Skin problems
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 and World Craniofacial 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 Foundation for Ectodermal Dysplasias, World Craniofacial 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 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 different types of ED are caused by changes in different genes and can be inherited in different ways.
Also known as: congenital ectodermal defect; ectodermal dysplasia (select examples); ectodermal dysplasia syndrome
Patient organizations
- National Foundation for Ectodermal DysplasiasEctodermal dysplasia · United States
- World Craniofacial FoundationEctodermal dysplasia · United States
- Children's Craniofacial AssociationEctodermal dysplasia · United States
- FACES: The National Craniofacial AssociationEctodermal dysplasia · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Ectodermal dysplasia.
Explore research for Ectodermal dysplasia
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- Recruiting studies from ClinicalTrials.gov
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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