Painful skin condition can also be hard to diagnose

Hidradenitis suppurativa often treated with antibiotics to little effect

WATERLOO — Waterloo dermatologist Kim Papp often sees patients who have been suffering for years with a common, but often misdiagnosed and poorly treated skin condition.

With hidradenitis suppurativa, painful abscesses form in the underarms, groin, buttocks, inner thighs and under breasts.

“It’s a condition that is not only absent from the general public’s mind, it’s very much absent from the physician’s mind,” Dr. Papp said. “We know that many of these patients go undiagnosed or misdiagnosed.”

Often for years or even decades, people with hidradenitis suppurativa suffer without helpful treatment. The condition can have a profound effect on a person’s ability to function, especially when it is advanced and foul-smelling pus drains continuously.

“It’s a horrific disease,” Papp said. “It just ruins your life.”

Papp said upward of five per cent of the population has the condition, even though most people are unlikely to hear about it.

“Everybody knows somebody who is affected,” Papp said. “They’re not going to talk about it. They’re going to do everything to hide it.”

He sees a few patients with it every month, most frustrated by the lack of help. Often it is treated like an infection, even though it’s an inflammatory process that mimics acne. “But it’s the sweat gland that’s affected,” Papp said.

Usually, the treatment offered is draining the abscess and a course of antibiotics, but that doesn’t provide much relief.

“They just go through these recurrent bouts,” Papp said.

When Papp looks through a patients’ history files, he finds virtually everyone has gone to the emergency department at least once. “It’s very painful. It will come up suddenly.”

Eventually, patients will avoid the emergency department, choosing to lance and drain the cysts themselves at home.

The chronic condition can appear in puberty and, by the 20s, there’s consistent recurrence. More women than men are affected.

The average Canadian patient will see five doctors

multiple times over eight years before being diagnosed, according to the Canadian Hidradenitis Suppurativa Foundation.

The first full week in June is hidradenitis suppurativa awareness week.

“It’s really now that we’re starting to understand the disease better,” Papp said.

New targeted therapies are available, although the condition is difficult to treat once it has advanced. Tunnels can form between the abscesses, and scarring can be extensive.

Papp was involved in clinical trials to test Humira, used as a treatment for arthritis and Crohn’s disease, on patients with hidradenitis suppurativa to reduce the inflammation.

“There is definitely help out there,” Papp said.

His advice to someone who suspects they have the condition — marked by recurrent, tender abscesses in areas where sweat glands are plentiful — is to go to their family doctor and ask for a dermatology referral. People visiting an emergency department or walk-in clinic should mention the condition to the doctor.

Recognizing there was little material on the condition in the public domain, Papp co-authored the ebook, “The Canadian Guide to Living with HS,” now available on Amazon.

The book, with all sales proceeds going to the Canadian Hidradenitis Suppurativa Foundation, was written for patients and the people around them to better understand and cope with the condition.

“For any disease, there is a need to have some type of guidance,” Papp said.