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WHAT IS HIDRADENITIS SUPPURATIVA?

What is Hidradenitis Suppurativa (HS)?

Hidradenitis Suppurativa (HS) is a debilitating, chronic, complex inflammatory illness which presents with extremely painful recurring boil-like abscesses. These abscesses may start out as pustules (small, pus filled bumps/sores) that can develop anywhere hair follicles are found.  It is possible to experience abscesses or lesions anywhere on the body with the exception of the palms of the hands, soles of the feet, and darker part of the lips. HS has a huge impact on the quality of life physically, mentally, socially, emotionally and financially.​

 

There are three Hurley Stages used to determine severity.

 

       Stage 1: Solitary or multiple isolated abscesses usually without significant scarring or sinus tracts. There can

                      be surface discoloration scarring at stage 1 due to trauma from the abscesses.

 

       Stage 2: Recurrent abscesses, single or multiple widely separated lesions, with scaring and sinus tract 

                      formation.

 

       Stage 3: Diffuse or broad involvement with extensive scarring and multiple interconnected sinus tracts

                      (tunneling) and abscesses.

There are also in between stages meaning you could be at a more severe stage 1 going into stage 2 without any tunnel formation yet, so there may be more significant scarring without the tunnel formation. You can also be in different stages in different body parts, i.e., stage 1 in your armpits and stage 2 in your groin.

HS is primarily a follicular occlusion and not a sweat gland disease.  Read more about this and why this distinction is important here.

HS may come with other symptoms such as fatigue, low grade fever, and overall malaise, especially during a flare. It is common to have other follicular skin conditions, immune mediated inflammatory illnesses and inflammatory illnesses with HS. It is not uncommon to have autoimmune illness(es) along with HS. .

HS is NONE of the following:

  • STD

  • Contagious

  • Rare

 

HS does not discriminate against age, race, sexual orientation, beliefs, intellectual/ developmental or physical disabilities, blood type, size, shape, or geographic location. 

There is no cure for HS and treatments aim to control disease severity and help reduce symptoms. Learn more here.

What causes HS?

The cause of HS remains entirely unknown. The best way we've heard it explained is that in acne the pore ruptures and the contaminants are released. With HS, the pores do not rupture and your innate immune system starts a small war trying to get rid of the contaminants that remain under the skin. This causes inflammation, redness, and swelling. 

 

This does not mean that HS is an infection or that our abscesses are infected.  The reason for the follicular occlusion is still unknown. Read more about follicular occlusions here.

What can trigger your HS?

HS triggers are unique to each person and what is a trigger for one may not be for another. Some common triggers discussed in the community can include:

  • Clothing (fabric, fit, etc.)

  • Weather (humidity and heat)

  • Food and Nutrition

  • Exercise

  • Friction 

 

Read more about triggers here.

Treatment Options

There is currently only 2 FDA approved treatments for HS, however, there are many off-label treatment options available for use. The future of HS treatments is exciting, the pipeline is full and robust; there is potential of another 1-2 drugs being approved for HS during the next year or two with many more to follow. Read more here.

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