Hidradenitis Suppurativa (HS) is a debilitating, chronic, complex inflammatory illness, also referred to as an immune-mediated inflammatory illness and follicular occlusion. It has a huge impact on quality of life physically, mentally, and emotionally. HS consists of extremely painful recurring abscesses that can develop anywhere hair follicles are found (there does not have to be hair growth). It is possible to experience abscesses or lesions anywhere on our body with the exception of the palms of your hands, soles of your feet, and the red part of your lips (see image below).
There is no cure for HS and treatment options are limited however, there are several off label treatments and many HS clinical trials underway. Find out about what clinical trials, surveys and studies are available to part in here.
HS has never been identified or classified as an autoimmune illness; meaning, to date, there is no strong evidence of or long-standing robust research supporting HS as an autoimmune illness. The past several years of research suggest HS as a possible autoinflammatory illness with innate immune involvement, however, more research is needed to determine a definitive category.
There are three Hurley stages used to determine severity.
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.
HS is NONE of the following:
HS does not discriminate against race, gender, age, sexual orientation, geographic location or blood type.
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. Research can be viewed here.
What is Hidradenitis Suppurativa / HS?
What can trigger your HS?
What causes HS?
It's still unknown entirely what causes HS. The best way we've heard it explained is that in acne the pore explodes and the contaminants come out, with HS they don't explode and remain internally where your innate immune system starts a small war trying to get rid of the contaminants causing the 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.
HS is a very personal disease and what is a trigger for one may not be for another. Some common triggers discussed in the community can include the below. Read more about triggers here.
Clothing (fabric choice, fit, etc.)
Weather (humidity, heat, etc.)
Just as HS is a personal disease as far as triggers go, it's equally as personal a disease when it comes to treatments. There is currently only 1 FDA approved treatment 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.