For many people, hearing the words Hidradenitis Suppurativa (often shortened to HS) might be the first time they’ve ever encountered this condition. Yet, HS affects millions of people worldwide — often silently, invisibly, and without proper diagnosis for years.

So, what exactly is this disease? And why is it so frequently misunderstood?

This guide is here to help you understand HS in a clear, compassionate way — whether you’re newly diagnosed, supporting a loved one, or beginning your journey to awareness.

What Is Hidradenitis Suppurativa?

Hidradenitis Suppurativa is a chronic inflammatory skin condition that causes painful lumps to form deep under the skin. These lumps can:

• Swell and become tender
• Break open and drain pus or blood
• Form tunnels (called sinus tracts) under the skin
• Leave scars that can be thick, raised, or rope-like

HS commonly shows up where skin rubs together, including:

• Underarms
• Groin
• Thighs
• Buttocks
• Breasts

It is not contagious, not caused by poor hygiene, and not your fault.

What Causes HS?

The exact cause is still being researched, but experts believe HS is related to:

• The immune system overreacting
• Inflammation in hair follicles
• Genetics — it can run in families
• Hormonal influences

Risk factors include:

• Family history of HS
• Smoking or vaping
• Higher levels of body weight
• Certain hormonal changes (often puberty through menopause)

But again:
HS is not caused by something you did wrong.

HS Comes in Different Stages

Doctors often classify HS using the Hurley Staging System:

Description

Stage I

Single or occasional lumps with minimal scarring

Stage II

Recurring flare-ups; clusters of lumps; some tunneling

Stage III

Widespread areas with multiple interconnected tunnels and scarring

Early intervention can make a significant difference.

How Is HS Diagnosed?

There is no specific test for HS — diagnosis is usually based on:

✔ Symptoms
✔ Location of lesions
✔ How often flares occur

Many are misdiagnosed with boils, acne, or infections before learning they have HS. If you suspect HS, a dermatologist familiar with HS is the best provider to consult.

Treatment Options

Right now, there is no cure — but there are options to manage symptoms and reduce flare-ups:

• Antibiotics (topical or oral)
• Biologics (like adalimumab)
• Surgical procedures or laser therapy
• Pain and wound care strategies
• Lifestyle supports (anti-inflammatory nutrition, stress reduction, smoking cessation)

A holistic approach — addressing both physical and emotional health — often works best.

HS Is More Than a Skin Condition

HS affects:

• Self-esteem
• Movement and daily comfort
• Sleep and fatigue
• Mental health
• Relationships and intimacy
• Employment and school involvement

The emotional toll is real — and worthy of care and support.

You deserve compassionate, knowledgeable providers.
You deserve to feel seen, heard, and supported.

Why Awareness Matters

Early diagnosis and proper care can prevent worsening symptoms and scarring. More awareness leads to:

• Faster identification
• Better treatment outcomes
• Less stigma
• More advocacy for mental health support

HS warriors deserve a future where care comes without judgment.

You Are Not Alone

IAHSN is here to support you through:

✔ Peer support groups
✔ Mental health and resilience coaching
✔ Teen and adult community spaces
✔ Educational webinars
✔ Advocacy and awareness initiatives

Together, we’re building a world where no one with HS suffers in silence.