Living with Loose anagen hair syndrome
A harmless hair condition in children in which hair can be pulled out easily and painlessly.
Understanding Loose anagen hair syndrome
It mostly affects blond girls in childhood. Most hairs are in the growing (anagen) phase and lack an outer sheath. Hair grows back quickly, and the condition improves on its own with age. It can sometimes occur with other differences, such as coloboma.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hair that pulls out easily and painlessly
- Changes in hair structure
- Unusual hair whorl
- Coloboma of the iris (cat eye)
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.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Children's Skin Disease Foundation
- 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
It is inherited in an autosomal dominant way, which means one changed copy of a gene is enough. GARD does not name a gene.
Also known as: loose anagen syndrome
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Loose anagen hair syndrome.
Explore research for Loose anagen hair syndrome
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