Living with hidradenitis suppurativa can be challenging and isolating, but increased awareness, educational resources, and community support are making a difference.
If you haven’t heard of hidradenitis suppurativa (HS), you’re not alone. But for the hundreds of thousands of Canadians living with the condition, it’s hard to forget. HS impacts patients’ lives daily, even before they know its name — which is a common occurrence, since the condition still lacks awareness in the medical community. Fortunately, resources and support are helping people living with HS navigate this challenging disease.
An often-misdiagnosed condition
HS is a chronic, systemic, immune-mediated skin disease that affects between one to three percent of the global population and up to four percent of Canadians. It causes small, painful lesions to form under the skin, most often in folds of the skin and areas where the skin rubs together, like the armpits, groin, buttocks, and breasts. The lumps heal slowly, recur, and result in unpleasant odour and discharge. They can also lead to scarring and dangerous tunnels under the skin, which can destroy tissue and spread infection.
HS can look like a lot of other things — a skin infection, ingrown hairs, spider bites, or a sexually-transmitted infection, for example — and so the condition is often misdiagnosed, leading to delays in diagnosis. In fact, the average Canadian HS patient will see five doctors with over 17 visits spanning eight years before being diagnosed.
Facing stigmas, barriers, and challenges
Suffering for years without answers or effective treatment often leaves HS patients frustrated, helpless, and feeling ashamed.
Co-founder and Director, HS Heroes
Krystle Sutherland, a 40-year-old woman living in Edmonton, Alta., with her husband and two Cocker Spaniels, has been dealing with HS since she was in the eighth grade. In the early stages, she had lesions in her groin only. “I didn’t tell anyone because it was embarrassing,” she says. “Then as I got older, it started to spread to my buttocks, thighs, and under my breasts.”
A lack of understanding and awareness of the condition caused Krystle to experience ineffective treatments that made her condition worse. “I’d go to clinics, and they’d just lance and drain the lesions,” she recalls. “This caused the condition to progress further. There was really no information on HS back then.”
Finally, after a successful diagnosis, a series of deroofing surgeries, a new medication protocol, and an assortment of lifestyle changes, Krystle feels like she has got her life back. And while her HS still rears its ugly head from time to time, she — and her doctors — now know what it is and how to treat it.
The importance of support
Krystle knows firsthand how painful and traumatizing HS can be. She recalls applying waterproof makeup to her bikini area in the eighth grade so she could go swimming in the summer without shame, having the condition impact her sex life as a young woman, and turning to drugs and alcohol due to the low self-esteem caused by this under-diagnosed disease. She doesn’t want anyone else to go through the same experience of feeling confused and alone, and emphasizes the importance of community support.
Krystle’s family and husband have been there for her through the hard times, and she in turn is now there for other patients facing this painful condition. Together with fellow HS patient Stephanie Carter, Krystle co-founded HS Heroes, a community for people living with HS dedicated to increasing awareness, educating, and advocating for those whose lives have been affected by the disease. HS Heroes supports patients, family members, friends, caregivers, and health care professionals alike. Its resources help the HS community to get educated and to feel connected to the wider HS community.
Brought to you by an Innovative Medicines Canada Member, Research-Based Pharmaceutical Company.