WHAT IS HIDRADENITIS SUPPURATIVA?

Hidradenitis Suppurativa (HS) is a chronic, inflammatory skin disease characterized by painful nodules and abscesses which form most commonly in sensitive areas: under arms and breasts, along buttocks and groin, though HS may appear anywhere there is hair.

When symptoms first appear, they appear as painful, recurrent pimples or cysts in telltale areas. Because of its appearance and location, HS is often misdiagnosed as ingrown hairs, folliculitis, staph infection, cellulitis, or an STD. But unlike those conditions, HS cannot be cured and the lesions left behind will often refill, have difficulty healing, and leave behind scars.

Women are diagnosed with HS 3x more often than men and their symptoms tend to start around puberty or other times of hormonal changes like pregnancy, postpartum, or changes in hormonal birth control.

HOW IS HIDRADENITIS SUPPURATIVA DIAGNOSED?

Hidradenitis Suppurativa (HS) is a clinical diagnosis, which means that a doctor cannot run a test to determine if you have HS.   A doctor will look for these signs and symptoms to determine if it is HS or a different, similar-presenting condition.

  • Have you had painful, swollen bumps that may look like boils or large pimples on your chest, underarms, groin, buttocks, or thighs?
  • Did those bumps reappear in those areas 3 or more times?
  • Did these bumps leave behind scars?
  • Do the bumps appear symmetrically – for example under both arms, or on both thighs?
  • In the same area where you get these bumps, do you also get comedones (blackheads)?

While diagnosing HS, doctors may also swab the affected area to rule out bacterial infection.  As a specialist in skin conditions, a dermatologist would be most familiar with the signs and symptoms of HS.

HOW IS HIDRADENITIS SUPPURATIVA SEVERITY MEASURED?

Explanation of Hurley Stages
Discussion of the limitation of Hurley Stages

WHAT CAUSES HIDRADENITIS SUPPURATIVA?

First and foremost, Hidradenitis Suppurativa (HS) is NOT contagious, nor is it caused by poor hygiene.

Doctors are still unsure of the causes of HS, but a malfunctioning immune system, genetics, hormones, unique anatomy of hair follicles, skin microbiome, and environmental triggers are all considered factors for HS.

WHAT ARE MYTHS & MISUNDERSTANDINGS ABOUT HS?

HS IS NOT CAUSED BY HYGEINE, SMOKING, OR OVERWEIGHT.

HS IS NOT CONTAGIOUS.

HS IS NOT A FORM OF ACNE.

Apocrine glands, the term “autoimmune”

WHAT IS NOT YET UNDERSTOOD ABOUT HIDRADENITIS SUPPURATIVA?

Knowledge gaps:  Pretty much everything.

Different “types” of HS (phenotyping, classifications)?

Why do some treatments work for some, but not for others?  Including, but not limited to exact opposite (paradoxial) reactions.  For example, some women report going into remission during pregnancy and others report it being worse than ever.  Some report being “cured” of their HS with menopause, some women only begin to get symptoms with the onset of menopause.

DOES HAVING HIDRADENITIS SUPPURATIVA MAKE ONE MORE LIKELY TO DEVELOP OTHER CONDITIONS?

IBD, RA, PCOS, Acne, Metabolic Syndrome, SCC & Lymphoma, RA