Living with Erosive pustular dermatosis of the scalp
A rare long-lasting scalp inflammation with painful pimples and crusts that can lead to scarring hair loss.
Understanding Erosive pustular dermatosis of the scalp
It usually occurs in older women (over 70). It causes painful pustules (pus-filled bumps), shallow open areas, and crusting on thin skin. Over time, this can lead to scarring hair loss (cicatricial alopecia).
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Painful pustules (pus-filled bumps)
- Shallow open areas on the scalp
- Redness
- Crusting
- Scarring hair loss on the scalp
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.
Patient organizations
- Scarring Alopecia FoundationErosive pustular dermatosis of the scalp · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Erosive pustular dermatosis of the scalp.
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