bringing hs out of hiding to help those suffering in silence
it took years for krystle sutherland to figure out she ...
published jul 23, 2021
last updated feb 20, 2025
3 minute read
3 minute read
krystle sutherland is photographed in lois hole centennial provincial park in st. aalbert, alta., on friday, june 4, 2021. sutherland, who has hidradenitis suppurativa (hs), created an hs patient support program in edmonton. (codie mclachlan/postmedia)
codie mclachlan
this story is sponsored by
abbvie corporation, a research-based pharmaceutical company and imc member
this story was created by content works, postmedia’s commercial content division, on behalf of a client.
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it took years for krystle sutherland to figure out she had hidradenitis suppurativa (hs). it’s a familiar refrain for the one to four per cent of the population in canada who potentially have the chronic condition. the painful abscesses and nodules that form in spots such as the armpit and groin often mean hs sufferers remain silent for fear of ridicule or misdiagnosis.
the latter happened to sutherland numerous times. she bounced around from referral to referral for years before finding the right dermatologist.
“i was 14 when i started to get hs flares,” sutherland recalls. “i started by getting them on my groin, and then eventually on my breast. i had a doctor once tell me to clean with bleach. at 14, i didn’t know what it was. i assumed it was an in-grown hair from shaving.”
teenagers are already self-conscious about their bodies, and that’s typically the time hs starts to surface. hs can be mild, with small abscesses that appear in areas where skin folds. it can also become debilitating, for example, not being able to lift your arms because the skin is all but gone. depending on the flare-up, nodules can reach the size of a golf ball.
due to years of having growths on her groin lanced, which she later learned is precisely what shouldn’t be done because they’ll grow back, sutherland says it’s has affected her ability to be active and forces her to think about what she wears.
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“i usually wear like a lot of cotton. i haven’t really been able to wear a real bra or underwear. i just wear a sports bra on top and i usually don’t wear underwear because i can’t have it like cutting into the creases,” sutherland explains. “there’s a lot of scarring on each side so i don’t really want an elastic band rubbing there. i used to wear a lot of dark colors so that if one of my lesions opened up and drain, it wouldn’t ruin my clothes.”
in order to fight the stigma surrounding this oft-misdiagnosed condition, sutherland, along with stephanie carter and charlotte rogers founded hs heroes, an organization that raises awareness for hs and provides a judgement-free space for people with hs, caregivers and the medical community to share their stories.
for much of her life, sutherland didn’t know anyone with hs. she felt shame, thinking she wasn’t normal or that she somehow caused this chronic, inflammatory, condition.
“it’s been really important to meet people that have walked in my shoes,” sutherland said. “our main goal at hs heroes is to really educate people, because the problem with there being so much information out there now on the internet is there’s a lot of misinformation, and we really pride ourselves on cutting through a lot of that and being a resource people can trust.”
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for hs awareness week, earlier this june 7-13, a number of landmarks across the country were illuminating purple in support, including niagara falls, the cn tower in toronto and high level bridge in edmonton. supporters also partook in neighbourhood walks and shared photos using the hashtags #hsheroes and #walking4hs.
there’s no cure for hs, but with the right diagnosis and care, it can be managed with treatments. hs heroes helps link canadians to experts in the field.
sutherland’s life has changed dramatically since finding the right medical professional. she found cutting out sugar and dairy, in her case, helped decrease inflammation. she started on antibiotics and laser removal, and now takes biologics weekly.
there are a number of ways to treat hs, each tailored to a patient’s needs.
it’s also key to understand who is more prone to getting hs and the triggers that cause flare-ups. according to the mayo clinic, women are three times more likely to have hs. stress is a common trigger, as are hormones.
hs runs in the family, so if a relative has or had it, you’re susceptible. hs also has a high comorbidity rate, meaning it’s often paired with another autoimmune or auto-inflammatory disease, or it can be a precursor to a future condition, such as diabetes, pcos or even heart disease.
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“for a long time, it was assumed that hs just a ‘skin thing,’” says sutherland. “we’ve come a long way, but there’s still a lot more we need to do to raise awareness and make sure people feel safe to come out of hiding, because there’s no reason to feel embarrassed. it’s not your fault.”
for more information, visit hsheroes.ca or use the #hsheroes and #walking4hs hashtags on social media.
disclaimer:
this story was created by content works, postmedia’s commercial content division, on behalf of abbvie corporation, a research-based pharmaceutical company and imc member
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