Jenn’s experience as a parent of a child with severe eczema has empowered her to become a passionate advocate, not only for her son Kyle’s health but also for supporting others in the eczema community in Canada, the United States and around the world.
“Kyle was just a month old when the eczema symptoms began, impacting our family’s daily life. Kyle’s eczema meant multiple trips to the doctors and emergency rooms and multiple medications, including topical steroid creams, topical antibiotics, oral antibiotics, and painkillers. We used to call him our ‘little mummy’ because we would wrap him in creams and gauze to help him sleep. Even when I had to leave my job as an early childhood educator because Kyle couldn’t stay in daycare, I went on a mission to find help for my son.
Kyle’s eczema also impacted his mental health. He was bullied at school; kids took pictures of his skin and posted them on social media. Things started to get better when we connected with the right doctors and a new treatment regimen. Kyle was one of the first kids in Canada to try a biologic drug for atopic dermatitis [the most common form of eczema]. As a parent, the guilt of not being able to ‘fix’ your child’s condition was overwhelming. Every treatment decision feels like a gamble.
A turning point was discovering Eczema Society of Canada and attending the Life with Eczema patient conference in Toronto. There, we found a community that understood our struggles, and I realized the importance of sharing our experiences and supporting each other. Before the conference, we didn’t know anyone going through the same eczema battles, and it was a very lonely and isolating place because people didn’t understand how severe eczema could be. Seeing other people at the conference who understood what we were going through and ‘just got it’ was life-changing.
Navigating Kyle’s journey has taught me the importance of community. Even when we faced challenges (and there were many), Kyle’s strength and connection with other eczema warriors kept me going. Kyle and I are passionate about advocacy because we don’t want others to struggle and feel alone like we did. Eczema management isn’t just about the medication; it’s about the mental and emotional support. Finding your community can turn struggles into a force for positive change.”
ESC sincerely thanks Jenn for sharing her story. If you or your child is struggling with eczema and need urgent care, go to your nearest emergency department. If you need support, email ESC at info@eczemahelp.ca or connect with us through our social media channels.
September 2024
