Hidradenitis suppurativa (HS) is a devastating inflammatory skin disease that produces discharge and a foul odor from many acute and chronic lesions. Up to 4% of Canadians live with HS. The painful lesions that are characteristic of HS appear in the skin folds, which makes activity and wearing comfortable clothing very challenging. It is often mistaken for boils, ingrown hair, a skin infection, generally poor hygiene, or a sexually transmitted infection.
The CSPA launched Scarred for Life: 2020 Update – A National Report of Patients’ Experiences Living with Hidradenitis Suppurativa in May 2020. The HS community has seen some gains since our baseline report on the disease in 2017 – for instance, the median time to diagnosis has decreased from 9 years to 7 years. However, patients continue to visit several different healthcare providers multiple times before receiving a diagnosis. Importantly, awareness about the disease continues to grow, but this is still a very long time for patients to wait to have their disease properly identified and open up the possibility of a tailored treatment program. HS is managed through a combination of surgery and medications, including one biologic available to treat HS in Canada. Ongoing research into the disease brings the promise of better care and disease management. In the meantime, the disease continues to have significant impacts on the lives of patients. More than 4 out of 5 survey respondents reported that their condition had a negative impact on their work performance, their social lives, and their ability to be intimate with a partner.
Through this report, the CSPA has identified 11 recommendations to healthcare providers and policymakers that will improve awareness about HS and care and management of the disease and the lives of HS patients.
Knowledge and Translation
The CSPA presented a poster at the 2020 Symposium on Hidradenitis Suppurativa Advances. See the poster here.
The CSPA shared the findings of the report with the Canadian Pain Task Force as part of its consultation on a national approach to pain. Read the CSPA’s message here.
We have several videos on our YouTube channel that we featured during HS Awareness Week 2020. Please follow this link to our YouTube channel to check out the following videos: