Most importantly, don’t be afraid to share your story. Fight the stigma. I am done being ashamed of this condition. I’m done hiding.
Ron Bercume lives outside of Philadelphia. He has been living with severe hidradenitis suppurativa for 20 years.
Ron Bercume lives outside of Philadelphia. He has been living with severe hidradenitis suppurativa for 20 years.I left home at 16 before graduating high school. I moved from upstate New York to a warmer climate, and in that warmer climate, something happened to me that had never happened before. What started as a boil-like lump on my thigh grew to a 4- or 5-inch open lesion. The same thing happened on the other thigh, and eventually the same boil-like monsters appeared and multiplied on my pelvis. I didn’t know what it was, and truthfully, I didn’t want to.
My best guess was it was a bad case of herpes—which wasn’t anything I wanted anyone to know or see. So I just wore pants, continued bussing tables, and pushed through the pain. Since then, I put myself through college, became a graphic designer, started my own company, and even worked for a Fortune 100 company as a user interface architect. For 20 years, I didn’t tell anyone about my secret lesions.
But finally, this past May, after experiencing a serious bleeding event while giving a presentation at work, I decided to do some research. It turns out I have stage three hidradenitis suppurativa (HS), also called acne inversa. Simply put, HS is an inflammatory skin disease that’s characterized by recurrent nodules or abscesses, large open wounds or sinuses, scarring, and foul-smelling pus-like discharge. But there’s more to it than that. Many people with acne inversa have mild cases where they just have one or two “flare-ups” at a time. Mine is a bit more complicated, with multiple, interconnected sinus tracts and abscesses in my thigh, pelvis and buttocks regions.
I’m not exaggerating when I say it’s the worst physical pain imaginable (quite literally, a huge pain in the butt). I essentially get 2-inch deep, festering, open sores in these areas. It feels like a sharpened, white-hot knife is cutting into my skin and is stuck there—and unfortunately, there’s not much I can do about it. There is no cure for HS, just treatment. But getting the appropriate treatment makes a huge difference!
Finish Reading on CNN: Hidradenitis Suppurativa: I’m Done HidingPatient Blogs Patient Stories Politics