Overview
Ectodermal dysplasia with natal teeth, Turnpenny type (also sometimes called Turnpenny-Fry syndrome or Turnpenny ectodermal dysplasia) is a very rare inherited condition that affects the development of tissues that form from the outer layer of the embryo, called the ectoderm. This includes the skin, hair, nails, teeth, and sweat glands. One of the most striking features of this condition is that babies are born with teeth already present — these are called natal teeth. This is unusual and can sometimes cause feeding difficulties in newborns. Beyond natal teeth, people with this condition may have sparse or thin hair, abnormal nails, and differences in how their skin looks or feels. Some individuals may also have differences in the number or shape of their permanent teeth as they grow older. Sweating may be reduced or absent in some cases, which can make it harder for the body to regulate temperature in hot weather. There is currently no cure for this condition. Treatment focuses on managing individual symptoms — for example, dental care to address tooth problems, protective measures for the skin, and monitoring for overheating. With the right support from a team of specialists, many people with this condition can lead full and active lives. Because this condition is so rare, much of what is known comes from a small number of reported families.
Key symptoms:
Teeth present at birth (natal teeth)Sparse or thin hairAbnormal or underdeveloped nailsMissing or unusually shaped permanent teethReduced or absent sweatingDry or abnormal skin textureDifficulty regulating body temperatureFeeding difficulties in newborns due to natal teeth
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Ectodermal dysplasia with natal teeth, Turnpenny type.
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Specialists
View all specialists →No specialists are currently listed for Ectodermal dysplasia with natal teeth, Turnpenny type.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Ectodermal dysplasia with natal teeth, Turnpenny type.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Which gene is responsible for this condition in our family, and should other family members be tested?,What dental care plan do you recommend, and how early should we start orthodontic assessment?,How do we safely manage overheating, especially for a young child?,Are there any other health problems we should watch for as my child grows?,Are there patient registries or research studies we could join to help advance understanding of this condition?,What support is available for the emotional and social challenges my child may face?,Should we see any other specialists, and how often?
Common questions about Ectodermal dysplasia with natal teeth, Turnpenny type
What is Ectodermal dysplasia with natal teeth, Turnpenny type?
Ectodermal dysplasia with natal teeth, Turnpenny type (also sometimes called Turnpenny-Fry syndrome or Turnpenny ectodermal dysplasia) is a very rare inherited condition that affects the development of tissues that form from the outer layer of the embryo, called the ectoderm. This includes the skin, hair, nails, teeth, and sweat glands. One of the most striking features of this condition is that babies are born with teeth already present — these are called natal teeth. This is unusual and can sometimes cause feeding difficulties in newborns. Beyond natal teeth, people with this condition may
How is Ectodermal dysplasia with natal teeth, Turnpenny type inherited?
Ectodermal dysplasia with natal teeth, Turnpenny type follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Ectodermal dysplasia with natal teeth, Turnpenny type typically begin?
Typical onset of Ectodermal dysplasia with natal teeth, Turnpenny type is neonatal. Age of onset can vary across affected individuals.