3 Reasons to Use the EczemaWise App Today
Do you ever feel like your eczema is a moving target? EczemaWise, the app created by the National Eczema Association, is here to help.
Published On: Feb 6, 2023
Last Updated On: Feb 14, 2023
We know eczema impacts more than the person who is experiencing it. Often an entire family will have to adapt to manage it together, including both parents and siblings.
We asked experts Emily Cole, RN and Jennifer Darr, LCSW of National Jewish Health, to weigh in on tips for navigating eczema as a family. We also spoke with NEA Ambassador Jenn Johnson, her son, Kyle Bruner, who shared his eczema story with NEA, and his siblings about their family’s experience.
Caregivers of children with eczema have more on their to-do lists than others. Giving extra baths, administering medications, keeping on top of allergens and all the other tasks that eczema management requires take time.
Johnson experienced this firsthand. She explained she spent over seven hours each day managing Kyle’s eczema and associated atopic conditions when he was young. She’s not alone. The More Than Skin Deep survey, published in 2020, revealed that 33% of caregivers reported spending 11 hours per week or more on eczema management.
To manage overwhelming tasks, Darr advised, “Prioritize and divide and conquer. It’s helpful to assess what is most important to the individual and the family and put those higher on the list.”
Sleep is another key issue for caregivers. Caregivers of children with atopic dermatitis are four to eight times more likely to get less than six hours of sleep per night, on average.
Emily Cole, a registered nurse at National Jewish Health said, “Parents do their best to take turns being up with the child during the night, but it really affects the functionality of the whole family if the majority of them are not sleeping.”
Parents and caregivers also experience extra emotional strain. The More Than Skin Deep survey found caregivers experience guilt, burnout and feelings of helplessness.
“I often tend to tell parents, there are things that you can control and things you cannot control. When it comes to navigating life with a child with eczema, worry about the ways you can make changes and the things that you can control,” Cole advised. “Allow them to be kids, and just remember that you are doing your best.”
Many people with atopic dermatitis also suffer from allergies and asthma. Kyle Bruner has had all three for as long as he can remember. His mom explained the impact of Kyle’s eczema on their family. “Our lives revolved around doctors and treatments daily from about 6 months old. Our diets all changed as his did; we worked outings, events, even homework and special times around his treatment needs.”
When asked what the most challenging part of avoiding triggers as a family was, Johnson said cutting out nuts was hardest. “But having to give our dog up for a month wasn’t easy either,” she said.
Time is scarce for all families, but this is doubly true when eczema is on the scene. Ashley Bruner, one of Kyle’s sisters, said, “As Kyle’s siblings we saw that he got a lot more one-on-one time with our parents than we did, but they did a great job at helping us understand what was going on and involving us as much as appropriate so that we also felt included.”
Since Kyle’s eczema was so severe, the whole family sometimes drove almost four hours from their home in Sarnia, Canada to Toronto for treatment.
“Those trips, selfishly, were some of the best times of my childhood because I was with my family, and we were going to a place that would help fix my brother. I always would get so excited because I felt like Toronto was where the smartest people in the world were, and if they were there, Kyle was in good hands,” said Tyler Bruner, Kyle’s brother.
Of course life with severe eczema isn’t all road trips. It can also pose emotional challenges for siblings. Tyler said, “It scared me seeing my brother in so much pain for so long. It seemed like it would never end.”
Resentment can also build. Johnson explained that at times, relationships between her children “were a bit strained.”
Jordynn Bruner, one of Kyle’s sisters said, “[Growing up] my belief was Kyle was being melodramatic in order to get the attention of others — most importantly, our mom. I was aware that he had eczema, but I was unable to understand what having eczema was actually like.”
Like many people with eczema, Kyle also has severe asthma and allergies. As a result, he sometimes had to stay indoors as a child. Tyler noted that Kyle’s restrictions changed their relationship. “It was tough for me because I always wanted him to be active with me. I always wanted a brother to play sports with, and he wasn’t allowed to, and I didn’t understand why for the longest time,” he said.
Even though Kyle’s eczema posed challenges for the family, there was also a positive outcome. “Eczema has brought us all closer, because we all have one common thing that we band together to fight for,” said Ashley.
“Make it so the whole family is involved with appointments and treatments,” said Johnson. “Talk with siblings about it and check in on how they feel. Do a monthly one-on-one date with each sibling so they have some time for just them, because honestly sometimes the days revolve around the child with special needs.”
Ashley advised compassion, “Don’t be too hard on yourself. Your other kids will be ok. They know you love them. You are human, and they understand that you can only do so much. Just do your best.”
Having people to lean on can make an enormous difference when managing eczema within a family.
“None of us can do it all, at least not for very long, so set realistic expectations and ask for help … from partners, children, friends, family, school, whomever has the resources and willingness,” said Darr.
While friends or family can help with some of the logistical aspects of managing eczema, being part of a community that deeply understands the condition can be transformative.
Life changed when Kyle attended his first NEA Eczema Expo. For Kyle, meeting others with the same condition was inspiring and affirming. Finding the NEA community also helped Kyle’s siblings and parents.
Tyler attended the NEA Expo in 2018 with Kyle and returned ready to educate the rest of the family. Johnson said, “I remember the day Tyler lectured his dad and sister about telling Kyle not to scratch because he learned at Expo it was hurtful, and most times [Kyle] didn’t even know he was scratching. Instead, he told them to offer options to keep [Kyle’s] mind busy.”
Jordynn also noticed a marked difference. “Since Kyle has become part of a new community that understands his struggles, because they struggle with eczema alongside him, I’ve been educated on what it really means to have eczema and have developed a newfound respect for those with this [condition],” she said.
“Our family has [a] purpose that we all share, and that is very special. It might be Kyle that suffers, but we all suffer with him. Experiencing that has taught us all a lot more empathy and understanding,” said Ashley.