Living with Ectodermal dysplasia with natal teeth, Turnpenny type
A very rare condition with teeth present at birth, missing adult teeth, dark velvety skin in body folds, and thin sparse hair.
Understanding Ectodermal dysplasia with natal teeth, Turnpenny type
Features include teeth present in the newborn period, fewer adult teeth than usual, and darkened, thickened skin in body folds (acanthosis nigricans). Body and scalp hair is sparse, thin, and slow-growing. GARD notes there have been no new descriptions in the medical literature since 1995.
Signs & symptoms
GARD doesn't list specific symptoms for this condition separately, but the summary describes these features:
- Teeth present at birth (natal teeth)
- Fewer adult teeth than usual
- Dark, thick skin in body folds (acanthosis nigricans)
- Sparse body hair
- Thin, slow-growing scalp hair
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, 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
- 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 a person's genes cause this condition. It is autosomal dominant, meaning one changed copy of the gene can cause it.
Also known as: ectodermal dysplasia with natal teeth turnpenny type; ectodermal dysplasia, hair/tooth type
Patient organizations
- National Foundation for Ectodermal DysplasiasEctodermal dysplasia with natal teeth, Turnpenny type · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Ectodermal dysplasia with natal teeth, Turnpenny type.
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