Patient Journey reveals atopic dermatitis sufferers face debilitating symptoms along with cycles of treatment challenges
Eczema Society of Canada maps 'The Atopic Dermatitis Patient Journey' to better understand patient experience from symptom onset, to diagnosis, to treatment, and highlight significant challenges to care.
TORONTO, Oct. 28, 2020 /CNW/ - To mark Eczema Awareness Month this November, the Eczema Society of Canada (ESC) is inviting Canadians to help raise awareness and share their own journey of living with atopic dermatitis (AD) by telling their stories on social media and including the hashtags #MyEczemaJourney and #MyADJourney.
The campaign follows ESC's release of The Atopic Dermatitis Patient Journey - a comprehensive look at the eczema patient experience in Canada. It aims to illustrate the shared path and challenges faced by patients living with AD, the most common form of eczema, from symptom onset, to diagnosis, to treatment, onward.
"Patients and their families commonly seek support from ESC to help cope with the burden of living with eczema - the intense itch, the sleepless nights, and isolation," says Amanda Cresswell-Melville, Executive Director, Eczema Society of Canada. "Living with unmanaged eczema is rarely simple or straightforward, and more understanding is needed for both patients and families who are suffering."
AD is a chronic inflammatory skin condition marked by periods of flare (i.e. dry, red, itchy skin that can crack, ooze, and bleed) and periods of remission, or disease improvement. The symptoms can lead to lack of sleep, low self-esteem, and cause a significant negative impact on quality of life. It is estimated that 11% of children and 7% of adults live with the disease.
ESC surveyed patients and caregivers, and revealed some key challenges:
- 41% of adults with AD are in a constant state of flare – they may experience some improvement of their symptoms but never experience periods of fully clear skin.
- Nearly half (48%) of adults with AD have experienced an eczema flare 'crisis' that required immediate medical intervention.
- Timing to see a specialist during a flare is a challenge, with 37% of adult patients and 42% of caregivers worrying they won't actually see their health care provider during an eczema flare.
Lesley-Anne lives with AD and was involved in the focus group that helped informed the report. "When I reflect on my journey, it took years to understand its complexity and to find a treatment plan that effectively managed my symptoms," said Lesley-Anne. "It affects so much more than just the skin – it affects the whole person. I became involved in this project to help shine a light on this condition, and I hope that by sharing what I have learned, I can prevent others from having to suffer like I did."
Cresswell-Melville adds: "Too often, we hear how this condition has been misunderstood or minimized. We hope that by showing the journey of AD patients and their families, we can highlight the gaps in care and help bring forward solutions to improve the lives of Canadians living with AD."
To learn more about eczema and to read the full report, visit www.eczemahelp.ca/journey.
About the Eczema Society of Canada:
The Eczema Society of Canada is a registered Canadian charity dedicated to improving the lives of Canadians living with eczema. Its mandate is to provide education, support, awareness, advocacy, and research. ESC offers patient and health care provider education, has support volunteers across the country, and funds research efforts through a competitive research grant program. To learn more, visit www.eczemahelp.ca.
SOURCE Eczema Society of Canada
Stephanie Landon, [email protected]
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