Hidradenitis suppurativa (HS) negatively impacts quality of life due to delays in diagnoses and treatment and prolonged suffering with pain for many Canadians.
Imagine being a mother who’s in too much pain to hug her child, or that you’re avoiding wearing a swimsuit because of a skin condition. These are harsh realities for those with hidradenitis suppurativa (HS), a chronic immune-mediated disorder that affects an estimated 1–4 percent of Canadians.
HS appears around the age of 22, most often in the folds of the skin where apocrine glands, a specialized type of sweat gland, are found, including around breasts, lower abdomen, armpits, groin, and buttocks. It manifests as hard lumps under the skin, as abscesses, and in the sinus tracts (or fistulas), linking two or more lesions together. The lesions cause a painful burning sensation, impaired mobility, and unpleasant, purulent discharge. It’s also devasting emotionally.
Battling against stigma and shame
Edmonton-based Krystle Sutherland was just 14 when she developed lesions on her groin and buttocks. “I was so embarrassed,” she recalls. “I didn’t even tell my mom.” Years later, she sought help from a gynecologist, her family doctor, and dermatologists. Her HS was mistaken for boils, ingrown hairs, infections, and sexually transmitted infections. Some doctors misdiagnosed symptoms of HS as poor hygiene — something that Sutherland, now 38, was also told.
HS patients frequently have difficulties getting an accurate diagnosis. For Sutherland, it took seven long years; which is the median for diagnosis. “I spent so much time trying anything that would help — holistic medicine, antibiotics, chronic pain management,” she says. “When my family doctor referred me to a dermatologist, I finally got answers. It was life-changing.”
Sutherland was prescribed a medication to manage her HS and it worked well. “I felt like I got my life back,” she says. Today, she’s helping others as a Director of HS Heroes, an organization she co-founded to provide support to fellow HS patients and to end the stigma around the painful, incurable skin condition.
HS misdiagnosis remains a pressing issue
The Canadian Skin Patient Alliance (CSPA) is also pushing for change for HS patients through education and advocacy and launching the annual HS Awareness Week, which takes place annually, in the first week of June. In May 2020, CSPA also published Scarred for Life, a comprehensive report about what it’s like to live with HS (or this condition). “This report showed that HS continues to be a tremendously devastating disease,” says Rachael Manion, Executive Director of CSPA.
The CSPA report found that Canadian respondents received an average of three misdiagnoses before their health care teams could identify HS as a diagnosis, indicating that those with HS often suffer for years. They feel frustrated, helpless, and ashamed and often give up seeking treatment because of common misdiagnoses which address the symptoms of HS, but not the underlying cause. “Though there has been improvement, we’re not yet where we need to be,” says Manion. “HS is extremely burdensome. It negatively impacts mental health, daily activities, family, and work life.”
Getting an accurate diagnosis is key. Contact your health care provider to discuss a possible referral to a dermatologist. If you have been diagnosed with HS, review your treatment plan and goals with your doctor or dermatologist.
This article was made possible with support from a research-based pharmaceutical company and IMC member.