A patient-first guide to understanding hidradenitis suppurativa, recognizing symptoms, navigating diagnosis, and managing life with a chronic inflammatory skin disease. Designed to support — not replace — conversations with your healthcare team.
HS is a chronic autoinflammatory disease involving the hair follicles and immune system that causes painful lesions, abscesses, drainage, tunneling, and scarring.
Approximately 2.5 million Americans are living with HS. Women are 3 times more likely to develop HS. Most diagnoses occur between the teen years and the 40s.
Stage I: mild lesions with little scarring.
Stage II: recurrent abscesses with tunneling and scarring.
Stage III: diffuse lesions with widespread tunneling and scarring.
HS is more common in women of color, especially African American and biracial individuals.
Patients often report stigma, embarrassment, and delayed diagnosis.
Seek emergency care for fever, spreading redness, confusion, lethargy, rapid heart rate, or severe infection symptoms.
HS cycles between flares and remission.
HS is frequently misdiagnosed as acne or infection.
There is no single test for HS. Diagnosis is usually made clinically based on lesion appearance and recurrence.
There is currently no cure for HS, but many people achieve remission with the right combination of treatments.
Living with HS often involves balancing wound care, pain management, lifestyle adjustments, and emotional wellbeing.
Patients may qualify for ADA accommodations including flexible scheduling and remote work.
Up to 50% of people with HS experience depression or anxiety.
HS affects more than skin — emotional wellbeing deserves care too.
Rate each symptom from 1 (mild) to 5 (severe). Bring this filled out to your appointments — it helps your provider see patterns and adjust your care.
This guide is for informational purposes only and does not constitute medical advice. Always consult your healthcare provider for guidance specific to your situation.
