Living with Uncombable hair syndrome
A condition in which scalp hair is dry, frizzy, and stands out in all directions, and usually improves with time.
Understanding Uncombable hair syndrome
It develops in childhood, often between infancy and age 3, but can appear as late as age 12. The hair is light, blond or silvery with a sheen, and grows out in many directions. The hair is not fragile or brittle. Only scalp hair is affected. For unknown reasons, it usually improves over time, and by adolescence hair lies flat with a normal or nearly normal texture.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Dry, frizzy hair that can't be combed flat
- Blond or silvery hair with a sheen
- Hair that grows out in many directions
- Coarse or woolly hair
- Hair that grows normally or a little slowly
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 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); 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 (variants) cause this condition and that it is autosomal recessive, so a child inherits a changed copy of a gene from each parent. It doesn't name a specific gene.
Also known as: pili trianguli et canaliculi; spun glass hair
Patient organizations
- National Foundation for Ectodermal DysplasiasUncombable hair syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Uncombable hair syndrome.
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