An estimated 1 million Canadians are managing a painful and misdiagnosed condition

By Dr. Hélène Veillette

Up to four per cent of Canadians are living with the effects of Hidradenitis suppurativa (HS).[i] HS is a chronic condition that is often misdiagnosed and mismanaged. It can appear as painful skin lesions, nodules or boils and can be found in the folds of the skin around the armpits, groin area, under the breasts, buttocks and inner thighs.[ii] HS can bring a level of pain, discomfort and stigma among patients.

The disease severity of HS is measured in something called Hurley stages with three specific stages to be aware of. The first stage is single or multiple abscesses without sinus tracts, the second stage is more widely separated recurrent abscesses with tract formation and the third stage is multiple interconnected tracts and abscesses across the entire area[iii].

As a healthcare professional treating many patients in my clinic with dermatological needs including HS, I’ve seen firsthand the impact of this chronic condition on a patient’s quality of life, and the impact of seeking the right care. As healthcare professionals coming from an array of different specialties and backgrounds, we have an opportunity to help guide and support these patients in their journey through HS.

Uncovering HS

There is not one single cause for HS. Research continues to be conducted to help us understand and analyze the impact of HS on individuals. Many factors can play a role, such as genetics, environment, and even hormones. While it may appear as a skin infection, it is more of a chronic skin condition that is neither contagious nor caused by hygiene.[iv]

What we do know is that HS can be hereditary and that women are more likely to develop this condition than men.[v] As HS can be a difficult condition to diagnose, many patients have had the experience of having their HS symptoms mistaken for other conditions such as boils, ingrown hairs, or skin infection.

While there is no cure, patients can find different ways to relieve HS pain and discomfort. Avoiding smoking, wearing loose clothing and managing stress appropriately can all contribute to better disease management.[vi]

It can take an estimated 7 years for a proper diagnosis

According to the Canadian Skin Patient Alliance’s Scarred for Life 2020 report, the median time from symptom onset to HS diagnosis is seven years. The experience of having symptoms of a condition that you’re unable to receive a proper diagnosis can be a frustrating and isolating situation for individuals.

With low disease awareness among healthcare professionals, HS can be harder to identify and ultimately diagnose in patients. Patients often suffer for years without effective treatment, leaving them feeling frustrated and discouraged from seeking the medical attention required to improve patient outcomes.

The critical role healthcare professionals have in timely diagnosis and improving patient outcomes

While dermatologists and family physicians are the often the main care providers, other healthcare professionals could run into a patient showing signs of HS and may not even know it.

The sooner that HS is identified among healthcare professionals, the greater chance an individual has in being directed to seek referral to a dermatologist or physician. As healthcare professionals, we know that when patients are equipped with the right information, they can feel empowered about their health and ultimately be in a better position to reach out for support and care.

From one healthcare professional to another, let’s work together to foster dialogue and understanding of HS. Enhanced awareness and education among all healthcare professionals can lead to better patient outcomes, and diagnosis can lead to proper treatment and support. While there is no cure for HS, there is always hope.

Hélène Veillette, MD, FRCPC, Professeure agrégée de Clinique, CHU de Québec-Université Laval.

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[i] Canadian Skin Patient Alliance. Scarred for Life: 2020 Report. A National Report of Patients’ Experiences Living with Hidradenitis Suppurativa. Available at https://canadianskin.ca/images/HS_Report/CSPA_HS_Report_May_22_2020_Final.pdf. Accessed June 2021.

^[ii] Canadian Skin Patient Alliance. Scarred for Life: 2020 Report. A National Report of Patients’ Experiences Living with Hidradenitis Suppurativa. Available at https://canadianskin.ca/images/HS_Report/CSPA_HS_Report_May_22_2020_Final.pdf. Accessed June 2021.

[iii] Canadian Hidradenitis Suppurativa Foundation. What is HS? Available at https://hsfoundation.ca/en/what-is-hs/ Accessed June 2021.

[iv] Canadian Skin Patient Alliance. Hidradenitis Suppurativa. Available at https://www.canadianskin.ca/skin-conditions-and-diseases#hidradenitis-suppurativa. Accessed June 2021.

[v] Canadian Skin Patient Alliance. Hidradenitis Suppurativa. Available at https://www.canadianskin.ca/skin-conditions-and-diseases#hidradenitis-suppurativa. Accessed June 2021.

[vi] Canadian Dermatology Association. Hidradenitis Suppurativa. Available a https://dermatology.ca/public-patients/skin/hidradenitis-suppurativa/. Accessed June 2021.