Living with ADULT syndrome
A rare condition affecting the skin, hair, nails, teeth, and hands and feet, with fused or missing fingers and freckling.
Understanding ADULT syndrome
Features include missing parts of the hands or feet (ectrodactyly), fused fingers or toes (syndactyly), small breasts, and a lot of freckling. People may also have fewer teeth, blocked tear ducts, thin hair, and nail differences. It is present from pregnancy or birth.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Freckling
- Fused fingers or toes (syndactyly)
- Nail differences
- Tooth differences
- Blocked tear ducts
- Thin or sparse 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 bone and joint specialists, eye disease specialists, genetic specialists and gum, teeth and mouth specialists.
- 3Consider genetic testing
Changes in TP63 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); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists); Gum, teeth and mouth specialists (odontologists)
- 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
Changes in the TP63 gene cause this condition. It is autosomal dominant, so a changed copy of the gene from one parent can be enough.
Also known as: acro-dermato-ungual-lacrimal-tooth syndrome; acro-dermo-ungual-lacrimal-tooth syndrome (adult syndrome); acrodermatounguallacrimaltooth syndrome; adult (acro-dermato-ungual-lacrimal-tooth) syndrome; pigment anomaly-ectrodactyly-hypodontia syndrome
Patient organizations
- National Foundation for Ectodermal DysplasiasADULT syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with ADULT syndrome.
Explore research for ADULT syndrome
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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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