Living with Hypotrichosis simplex of the scalp
An inherited condition with slow, steady hair loss that is limited to the scalp.
Understanding Hypotrichosis simplex of the scalp
In HSS, hair loss is diffuse (spread across the scalp) and gets worse over time. It is limited to the scalp. GARD lists childhood as the usual time it begins.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hair loss from the scalp (alopecia)
- Sparse scalp hair
- Fine hair
- Slow-growing scalp hair
- Thickened outer layer of skin (hyperkeratosis)
- Thickening of the top skin layer (epidermal acanthosis)
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
GARD says changes in genes cause this condition. It is inherited in an autosomal dominant pattern, so one changed copy of the gene can be enough.
Also known as: hereditary hypotrichosis simplex of the scalp
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 Hypotrichosis simplex of the scalp.
Explore research for Hypotrichosis simplex of the scalp
Explore actively recruiting Hypotrichosis simplex of the scalp studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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