Hidradenitis suppurativa (HS) is a chronic skin condition. It is characterized by abscesses, blackheads, inflammation, lesions and scarring.
HS forms painful clusters around the arm pits, the anal area, and the groin.
It occurs in places where sweat glands are present, or other skin-to-skin contact areas such as under the breast or even the folds of eyelids.
Numerous pus-filled lumps form, creating pockets as large as baseballs making it difficult to walk or raise one’s arm. These abscesses may persist for years, flaring up, draining, spreading and creating wounds that do not heal.
What often isn’t addressed is how devastatingly debilitating it is for those who live with this condition.
Not only do those with HS suffer from chronic pain from abscesses in various private parts of their bodies. They also must be constantly vigilant of odors caused from drainage, or be concerned that an abscess will open without warning in a public place.
Overall, people with HS are made to feel by doctors that they are unhygienic, unclean, and somehow at fault for the fact that they are suffering from this uncommon skin ailment.
I was invited by the HS community to join their closed Facebook group to learn more about the struggles those with HS live with. The following are excerpts of their stories.
Many HS patients recall periods in their youth when things began. Kim remembers, “as a young child I had a 'boil' on the back of my leg that was treated by a doctor. Still wonder if this was not my first lesion.”
Angela wrote, “When I was in my late teens and early 20's I would occasionally get one or two small boils in a year. I never saw a Dr. about it as they always appeared in my lower region of the pubic areas. They were sore and painful and I usually had to wait until they burst on their own or if they didn't and the pain was bad enough I would find a sterile needle and lance these sores myself ...”
Rick recalls his last day in Gym in High School. "A cyst in my upper inner thigh ruptured and drained down the inside of my leg while in the showers. Others who were present laughed and questioned my gender."