Local woman talks about painful skin disease
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Rachel Cox-Rosen, KPVI
POCATELLO — A local woman is opening up about a painful skin disease for the first time.
It’s called Hidradenitis Suppurativa, commonly referred to as HS, and presents itself as large cysts all over the body.
“It happens in areas like your underarms, underneath your boobs, like in your groin, sometimes on your thighs,” says 18-year-old Mykah Johnson.
Johnson was misdiagnosed with a serious case of acne when she was 14, so she was put on Accutane, which made her condition even worse.
“It was a nightmare,” says Johnson. “There’d be sometimes where I’d just…cup my hand on my cheek and rest my hand and it [the cyst] would pop in my hand. I remember some people being like ‘Hey, there’s something on your shirt, it looks like you’re bleeding.’ And I’d be like, ‘Oh yea…I might have scratched my mosquito bite too hard’. I’d come up with little excuses like that because I didn’t know what to say.”
It was a dark time in Johnson’s life.
“It’s one of those things that I would take from her and go through for her if I could,” says Megan Borich, Johnson’s mom.
But two years ago, Johnson and her family moved to Pocatello and met physician assistant Amy McKinlay.
“With Mykah it was just one of those where I kind of was trying to think outside the box of ‘Why isn’t this working?’” McKinlay says.
McKinlay diagnosed Johnson at her first appointment.
“For her to kind of put a name to what was going on was kind of an overwhelming feeling,” says Johnson.
Johnson now takes one shot of the medication Humira every week, and she will for the rest of her life, as there is no cure for HS.
“With Humira calming that inflammation down, it helps decrease the cysts (and) helps so she doesn’t even get cysts,” says McKinlay. “And if we can decrease the cysts, we can get rid of the scarring.”
Johnson is now getting micro-needling, lasering and dermabrasion, which will all help get rid of her scars.
And with a tell-all Facebook post, she’s finally opening up about her disease in hopes of educating and helping others.
“It’s been really good to know that if I want to wear an off-the shoulder top, now I can, because I’m not worried about people finding out about this big secret that I have,” says Johnson.
Mckinlay says it’s common for HS to be misdiagnosed, especially as acne.
It affects people of all ages and genders, and many don’t come forward at all because of embarrassment.
Mckinlay encourages people to get treatment for HS as soon as possible because once scarring occurs, it’s harder to treat. She says knowledge about HS is growing, and the more people who talk openly about the disease, the better.