We’re studying how patients with eczema and their caregivers experience medical care, treatments, and the burden of the condition. If you are a patient or a parent of a child with eczema please take a few minutes to complete a brief survey in order to contribute to this important study intended to benefit patients. Participants will be entered into a drawing for a USD$100 gift card.
Thank you in advance!
It’s tough to have a skin condition. The impact of living with a skin condition is much more than “skin deep”, though. The weight on the emotional and mental health of people affected, and especially those who are children and youth, can be profound.
Imagine not being able to take a hot bath or shower, or go swimming with friends, or participate in your favourite sports. Imagine having to avoid wearing certain types of clothing and not being able to eat some of your favourite foods.
When you know better, you do better. The Shed the Shame campaign is dedicated to creating awareness of the social, emotional and mental health impacts of living with skin conditions, diseases or traumas. It is hoped that all Canadians will have a better awareness of all the effects of skin disorders and can be more sensitive toward and connected to individuals with one.
For the 2022 campaign, we will be joined by Dr. Dayna Lee-Baggley, a registered clinical psychologist who specializes in living with a chronic illness, with a video series featuring her answers to questions from the skin patient community on how to manage the psychosocial impacts of living with a visible skin condition, chronic pain, itch, and other topics.
All of your questions, like the this one, that were posed to Dr. Lee-Baggley will be featured on our YouTube channel.
Dr. Dayna Lee-Baggley is a Registered Clinical Psychologist in BC, AB, ON and NS. She is the director of Dr. Lee-Baggley and Associates, a virtual health psychology clinic specializing in clinical interventions, training for healthcare providers, and research in health-related issues (e.g., chronic pain, sleep, COVID burnout, PTSD for frontline workers). She worked for almost 15 years in multidisciplinary teams on medical, surgical, and cancer care hospital units providing assessment, therapy, and consultation for patients with chronic and life-threatening health conditions. She also conducts research as an Assistant Professor in the Department of Family Medicine and cross-appointments in the Departments of Surgery and Psychology & Neuroscience at Dalhousie University and an Adjunct Professor appointment in the Department of Industrial and Organizational Psychology at Saint Mary’s University. She has an active research program on behavior change, obesity, chronic disease, professional resiliency and Acceptance and Commitment Therapy. Dr. Lee-Baggley has close to 45 peer-reviewed publications and over 130 scholarly presentations. She is a senior consultant providing healthy workplace interventions for employees, teams, and leaders with Howatt HR Consulting and the Chief of Research for the Howatt HR Applied Workplace Research Institute. She is an internationally recognized trainer in Acceptance and Commitment Therapy and a certified therapist in Emotion Focused Therapy for Couples. She was the recipient of the 2017 Women of Excellence Award for her contributions to Health, Sport, and Wellness (Canadian Progress Club Halifax Cornwallis). She is the author of the book “Healthy Habits Suck: How to get off the couch & live a healthy life…even if you don’t want to.” http://drleebaggley.com
You can follow her on social media:
This project was supported by Janssen, LEO, Pfizer and GlobalSkin.
It’s tough to have a skin condition. The impact of living with a skin condition is much more than “skin deep”, though. The weight on the emotional and mental health of people affected, and especially those who are children and youth, can be profound.
Imagine not being able to take a hot bath or shower, or go swimming with friends, or participate in your favourite sports. Imagine having to avoid wearing certain types of clothing and not being able to eat some of your favourite foods.
When you know better, you do better. The Shed the Shame campaign is dedicated to creating awareness of the social, emotional and mental health impacts of living with skin conditions, diseases or traumas. It is hoped that all Canadians will have a better awareness of all the effects of skin disorders and can be more sensitive toward and connected to individuals with one.
The 2021 Campaign aims to take those quiet whispers about people living with visible skin conditions and bring them out into the open and encourage conversations! So #ShedTheShame and click on the image to share your story.
The Canadian Skin Patient Alliance is grateful for the support of the following for helping make this campaign happen.
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The students of DIG Agency in Algonquin College’s Advertising program |
June 7-13, 2021
Up to 4% of people in Canada are impacted by hidradenitis suppurativa (HS). In recognition of HS Awareness Week 2021, the CSPA is collaborating with HS Heroes and Hidradenitis & Me to share new resources about living well with HS and educate the public about the impacts of this devastating disease.
In 2020, the CSPA released Scarred for Life: 2020 Update – A National Report of Patients’ Experiences Living with Hidradenitis Suppurativa which included critical information about getting a diagnosis, the importance of a comprehensive care approach to managing HS, experience with - and hopes for - treatments, and advice to people newly diagnosed with HS.
This year, we are building on several of the recommendations of the Scarred for Life report. Through our collaboration this year, we are excited to bring you:
We invite all to help us to spread the word and to participate, to become informed, and to enjoy our week-long schedule of HS Awareness Week Activities.
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| Ottawa | Edmonton | St. John's | Toronto |
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| Brampton | Burlington | Mount Pearl | Niagara Falls |
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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.
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The CSPA presented a poster at the 2020 Symposium on Hidradenitis Suppurativa Advances. See the poster here.
The CSPA is pleased to have a poster accepted for the 2020 CADTH Symposium. See the Poster here and our abstract 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:
