Living with Folliculitis decalvans
A rare long-lasting scalp condition that causes patches of scarring hair loss with pimples and crusts, mostly in middle-aged adults.
Understanding Folliculitis decalvans
It usually affects middle-aged adults. Patches of hair loss slowly spread, mostly at the top and back of the scalp, along with red skin around hair follicles, pimples, and bloody crusts.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Patchy hair loss with scarring
- Pimples (pustules) on the scalp
- Redness of the skin
- Bloody crusts
- Repeated skin infections
- 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
Specialists who may be involved include 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
- 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 Scarring Alopecia 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
GARD doesn't describe a cause for this condition yet.
Also known as: folliculitis depilans; quinquaud folliculitis decalvans; quinquaud's disease; quinquaud's folliculitis decalvans
Patient organizations
- Scarring Alopecia FoundationFolliculitis decalvans · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Folliculitis decalvans.
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