Living with Monilethrix
A condition that affects hair, causing sparse, brittle hair with a beaded look under a microscope.
Understanding Monilethrix
Under a microscope, each hair strand shows a beaded look because the hair shaft narrows at regular points. Hair is sparse (hypotrichosis), short, and brittle and breaks easily. Hair is usually normal at birth, and problems appear in the first months of life. Mild cases affect only the back of the head or nape. Severe cases can affect the whole scalp and other body hair. Skin and nails are occasionally involved.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Brittle hair that breaks easily
- Sparse, fine hair
- Slow-growing hair
- Patchy hair loss
- Small skin bumps (follicular hyperkeratosis)
- Nail differences
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 Alopecia Areata Foundation 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 Alopecia Areata Foundation
- 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 Alopecia Areata Foundation 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 genes (also called variants) cause this condition. It can be autosomal dominant (a changed copy from one parent is enough) or autosomal recessive (a changed copy from each parent).
Also known as: beaded hair; congenital beaded hair; moniliform hair syndrome
Patient organizations
- National Alopecia Areata FoundationMonilethrix · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Monilethrix.
Explore research for Monilethrix
Explore actively recruiting Monilethrix studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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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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