Living with Curly hair - acral keratoderma - caries syndrome
An extremely rare condition with brittle curly hair, early tooth loss, thick nails, and thick skin on the hands and feet.
Understanding Curly hair - acral keratoderma - caries syndrome
People lose curly, brittle, dry hair early, lose teeth early from cavities, and have thick nails and thickened skin on the hands and feet (acral keratoderma). They also sweat less. Eyebrows and eyelashes may be sparse. The features appear to worsen with age. It starts in childhood and the teen years.
Signs & symptoms
GARD doesn't list a symptom list for this condition. Its summary mentions these:
- Brittle, curly hair that is lost early
- Early tooth loss from cavities
- Thick nails
- Thick skin on the palms and soles
- Less sweating (hypohidrosis)
- Sparse eyebrows and eyelashes
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 genes cause this condition. It doesn't name a gene.
Also known as: chac syndrome; chacs; chacs - curly hair, acral keratoderma, caries syndrome; curly hair-acral keratoderma-caries syndrome; curly hair, acral keratoderma, caries syndrome
Patient organizations
- National Foundation for Ectodermal DysplasiasEctodermal dysplasias · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Curly hair - acral keratoderma - caries syndrome.
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