Living with Central centrifugal cicatricial alopecia
A rare hair-loss disease that scars the scalp, mostly affecting women of African ancestry.
Understanding Central centrifugal cicatricial alopecia
It affects women of African ancestry. It may be linked to hair-grooming habits or run in families. It often begins in adulthood with hair breaking for no clear reason. Hair then thins at the top of the scalp and spreads outward. The scalp may show inflammation, damage to hair follicles, and scarring (fibrosis).
Signs & symptoms
GARD doesn't list a separate symptom list for this condition. Its summary describes these features:
- Hair breaking for no clear reason
- Thinning hair at the top of the scalp
- Hair loss spreading outward
- Scalp inflammation
- Scalp scarring
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 Scarring Alopecia 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 it may be linked to hair-grooming habits or may run in families. It is listed as inherited in an autosomal dominant way. No specific gene is listed.
Also known as: ccca; hot comb alopecia
Patient organizations
- Scarring Alopecia FoundationCentral centrifugal cicatricial alopecia · United States
You are more than your diagnosis
Perspectives from people navigating life with Central centrifugal cicatricial alopecia.
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