Hidradenitis Suppurativa (HS) is a common, painful, debilitating, and chronic inflammatory skin disease primarily occurring in inverse areas of the skin, e.g. axillae and groin. HS causes painful and chronically recurring, deep-seated follicular nodules, papules, pustules and abscesses, leading to suppuration, fibrosis, and scarring of the skin.
Unfortunately HS has been labeled as a rare disease. But in fact it is not rare, it is only rarely diagnosed properly. HS affects at least 1% possibly 4% of the global population. It indiscriminately affects both males and females, and can be found in many countries, affecting many different cultures. I am also aware of at least one celebrity who suffers from HS.
While death caused by HS is considered rare. It is my opinion that the morbidity rate is grossly unreported or underestimated. Due to the fact that many deaths are caused by suicides or complications arising during treatment. When an HS patient dies, various complications or other factors are listed as the primary cause of death. Thereby distorting the actual number of deaths caused by HS.
Due to this method of recording deaths, HS is often overlooked as a serious or dangerous disease. Also, in my opinion, HS is often ignored by the media due to this underreporting of deaths coupled with the fact that it is an extremely horrendous disease. Over the years, we as an HS community have requested and even pleaded with various media outlets for assistance in spreading awareness regarding HS. Mostly we are ignored. Sometimes we are even told that HS is acne, and that no one has ever died from acne. I assure you that HS is NOT acne and people are dying from this horrendous disease.
I am aware of at least three deaths caused by complications that have happened in the last year within our online HS community. But again, this is not an accurate picture as to how many people are dying from this disease. Many people who have this disease have yet to be diagnosed and/or are not online. I am certain that most deaths caused by HS are never recorded as such.
There are millions of people worldwide who have this disease but have not yet been diagnosed. Please consider helping us spread awareness so that we can find these people before they commit suicide or die of complications.