Living with Perifolliculitis capitis abscedens et suffodiens
A severe scalp condition with painful lumps and cysts, hair loss, and lasting scars.
Understanding Perifolliculitis capitis abscedens et suffodiens
People develop large lumps and cysts and smaller bumps on the scalp. Hair is lost in the affected areas, and permanent scars and bald patches form. It is sometimes linked to acne conglobata, hidradenitis suppurativa, and spinal arthritis. It appears in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Firm lumps under the scalp skin
- Hair loss
- Tender scalp
- Itching
- Swelling
- Repeated skin infections
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: dissecting cellulitis of scalp; dissecting cellulitis of the scalp; folliculitis abscedens et suffodiens; perifolliculitis capitis abscedens; perifolliculitis capitis abscedens et suffodiens, familial; perifolliculitis of scalp
Patient organizations
- Scarring Alopecia FoundationPerifolliculitis capitis abscedens et suffodiens · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Perifolliculitis capitis abscedens et suffodiens.
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