Living with Tricho-dento-osseous syndrome
A genetic condition with curly hair at birth, tooth enamel differences, and denser bones.
Understanding Tricho-dento-osseous syndrome
It is marked by curly or kinky hair at birth, thin or discolored tooth enamel, teeth with enlarged pulp spaces (taurodontism), and denser, thicker bones in the skull. It is noticed in childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Curly or kinky hair at birth
- Poorly formed tooth enamel
- Small, widely spaced teeth
- Tooth abscesses
- Higher than usual bone density
- Brittle nails
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 bone and joint specialists, genetic specialists, gum, teeth and mouth specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in DLX3 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
National Foundation for Ectodermal Dysplasias may keep lists of experts for this condition.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); 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
This condition is caused by changes in the DLX3 gene. It is autosomal dominant, which means one changed copy of the gene can be enough to cause it.
Also known as: amelogenesis imperfecta - osteosclerosis syndrome; taurodontism - curly hair - osteosclerosis syndrome; tdo; tdo - trichodento-osseous syndrome; tdo syndrome; tricho dento osseous syndrome
Patient organizations
- National Foundation for Ectodermal DysplasiasTricho-dento-osseous syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Tricho-dento-osseous syndrome.
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