NEA and PeDRA wrap up their Eczema Counts project with new priorities for eczema research.
Published On: Jun 2, 2018
Last Updated On: Jul 13, 2021
On her way home from her job at Walmart in Fort Walton Beach, Florida, Stephanie Powell picks up treats for all three of her children. She does this to signal that she loves all of them equally, even though it may not always appear that way.
Her middle child, Isabelle, has severe eczema, requiring Powell to spend much more time with the 9-year-old than with Gabrielle, Isabelle’s hearing-impaired older sister. As for the littlest Powell, 18-month-old Christopher Jr. (C.J. for short), his mother can often be found holding him with one arm while using the other to help Isabelle with her complicated after-bath skincare ritual.
“Gabrielle is so endearing with her sister,” Powell said, “but she does feel left out. Having one child with eczema means that I can’t always be there the way I want to be for my other kids. If Isabelle’s skin breaks open, that determines how I’ll be spending my time on any given day.”
Diagonally across the country in Spokane, Washington, Heather Sullivan’s daughter, Hazel, also shows great tenderness toward her younger brother, Sawyer, whose eczema is at the extreme end of the severe range.
Sawyer has lived in near-constant torment since infancy, his mother said. A baby who failed to thrive, he ingested nothing but liquids until age 3. Sullivan tried everything—even cyclosporine, considered controversial and sometimes dangerous when used to treat children.
“I knew it was risky. He was only 15 months old. I guess I felt we had nothing to lose,” she said. “Between his round-the-clock symptoms, lack of sleep and life-threatening allergies, Sawyer’s quality of life was so poor that the risk seemed worth taking.”
Because of his mother’s desperate decision, Sawyer got a two-year break from eczema, giving him a chance to start learning a few coping skills, such as “how not to scream, scratch violently and react to every stimulus,” Sullivan said. Eventually, she took her son to a new hospital, where he was weaned off cyclosporine. But then his eczema returned with a vengeance.
To make matters worse, 12-year-old Hazel has eczema too—the moderate type.
“Sawyer’s health has always taken precedence,” Sullivan admits. “Hazel is mostly on her own when it comes to taking care of her skin. Obviously, this isn’t an ideal parenting dynamic.”
Jennifer LeBovidge, a psychologist at Boston Children’s Hospital and a member of the Harvard Medical School faculty, believes that parents like Powell and Sullivan are way too hard on themselves.
For parents of children with eczema, feeling guilty is the air they breathe, LeBovidge said. And there’s no shortage of reasons for these feelings, which are often unjustified. “Focusing on the child with eczema and spending less time with the other children is a big one,” she noted.
To put things into perspective, parents should remember that they’re only human, LeBovidge explained. “No individual human being can be in two or three places at once or deal with everyone’s needs on demand, 24/7,” she said.
There’s also the ever-popular, “I must be doing something wrong,” LeBovidge continued. “One parent recently told me he had used topical steroid cream on his child’s inflamed skin, but that the disease ‘came back.’ He was convinced that its return was his fault,” she recalled.
“Eczema is a chronic condition, so it can have a mind of its own. By ‘chronic,’ we mean that it’s lifelong and that it comes in cycles. You can do everything in your power to help your child avoid triggers, and you can try all kinds of treatments, but eczema eventually flares no matter what you do. Its reappearance doesn’t mean you did anything wrong or failed to do something right.”
Parents can also feel divided between their responsibilities at work and at home, LeBovidge added. That’s true for all parents. But multiply that feeling by a factor of a hundred, and you begin to sense the magnitude of the inner conflict eczema parents experience when work and family duties rip them in two.
Desirré Buck, a married mother from York, Pennsylvania, went back to work as a retirement planner soon after the birth of her first child, Sophia, who developed eczema shortly in infancy—but she lasted all of six months on the job.
“I wanted to be a supermom and do it all,” she confessed, “but my daughter’s skin issues consumed me at work. I was constantly thinking about what I was going to do to make it better. My heart and my brain were in two different places, with finance, investment and numbers on one side and Sophia’s inflamed skin on the other.”
Buck was able to make the decision to stay at home with her children. That has worked out well for the whole family. Now, she can devote herself to tending to her children’s needs during the day.
But then, there’s night, with its own line-up of challenges and frustrations.
“The No. 1 issue affecting eczema families”
“Sophia, our toddler, digs into her skin in her sleep, making herself bleed and causing her itchy patches to open,” said Buck. “She screams and kicks at night due to aggravation from a lack of sleep. My husband and I are often up dealing with our toddler while trying not to wake Dominic, our infant. The stress on our family can feel unendurable.”
The Bucks are far from alone, said LeBovidge: “Hands down, the disruption of sleep is the No. 1 issue affecting eczema families. More than 60 percent of parents report between one and two hours of lost sleep per night. And these numbers are a lot higher for parents of children with severe eczema.”
Siblings are affected too, she added, especially if children share a room. And obviously, the child with eczema suffers hugely from the effects of poor sleep. For eczema families, then, sleep disruption is a whole family affair.
It took a while for Buck to grasp that she couldn’t control her daughter’s sleep—or her eczema. She used to run herself ragged trying to create a trigger-free environment for Sophia. But gradually, she and her husband Bill started reading other parents’ stories and broadening their awareness of the condition itself.
“Bill actually had severe eczema when he was a child, and he still has a mild case of it,” she added. “He remembers all too well what it was like. I’ve learned a lot from him, and I’m more patient with our daughter as a result. When she scratches herself, when she acts out, when she can’t sleep, I remind myself that she can’t help it.
“Now that we understand so much more about eczema—the way it has a life of its own—we no longer believe that it’s totally up to us to make it go away,” said Buck. “That has been a huge relief for both of us.”
LeBovidge said there’s plenty that parents can do to feel more comfortable and in control, while helping their child with eczema gain a greater sense of control as well. Above all, the psychologist warned against getting into ‘don’t scratch’ mode.
“We all know that scratching makes eczema worse, but battles over scratching increase stress for everyone, plus they’re counterproductive, only fueling the itch-scratch cycle.
“Instead, parents can develop a toolkit for dealing with severe itch,” she added, including moisturizer, a cool compress, a bath ritual, a change of scenery and creative ways to keep the child’s hands busy.
“A parent’s job is not to stop all scratching,” LeBovidge advised. “Mainly, parents need to remember that they’re part of their child’s treatment team. I remind them to make sure to tell their provider if something isn’t working or if they can’t afford a product or medication.
“For most families, the burden of eczema tends to get lighter over time,” she continued. “Skincare becomes less intensive. Gradually, kids take on a bigger role in their own care, and parents can begin to let go.
“While remaining available for support and monitoring, parents can start turning over day-to-day skincare to their older child with eczema, even if that care is less than perfect at first.”
Ashley Lora, now 26, has had atopic dermatitis (AD) since she was only 2 months old—and she remembers all too well what life was like as the youngest of three children, the only girl and the only one with eczema.
From the Dominican Republic, Lora’s parents raised their children in Fair Lawn, New Jersey, intent on pursuing the American dream. But their daughter’s eczema upended their best laid plans.
“Because of my eczema and my asthma, we couldn’t have a dog in the house,” she said. “We couldn’t have carpeting. I used to sleep with my parents so they could stop me from scratching myself. I missed a lot of school, and I was in the ER a lot. My parents had to put their own lives on hold to give me a normal childhood. When I think about what they went through, my level of gratitude is huge.”
By her early 20s, Lora had become dependent on topical steroids. She finally stopped taking them, but she soon went into serious withdrawal and ended up bedridden for two years.
Then, in 2015, she entered the clinical trial —and about 90 percent of her skin has since cleared.
“For the first time in my life, I understand what freedom feels like,” said Lora. “I’m interested in and astounded by everything, like sitting in the sun, doing water activities and just being spontaneous and adventurous!”
Today, Lora is a business coach living in Los Angeles who helps people come up with professional goals and strategies for realizing them. She said her own goal is to become a public speaker for the eczema community.
“I never thought I could heal from eczema—but I did, at least for now,” Lora said. “For the first time, I can imagine having my own children. I realize they might inherit eczema from me. That could happen. But that doesn’t seem quite as terrible as it once did. Now, I see that healing really is possible.”
At Seattle Children’s Hospital, physician assistant Morgan Meier takes care of patients and families representing every nation, race, age and ethnic group. Many are on Medicare or Medicaid. Serving four states—Idaho, Montana, Alaska and Washington—the dermatology clinic at Seattle Children’s is one of the only places where lower-income families can receive treatment for their child with eczema from a specialist like Meier.
As if eczema weren’t enough of a hardship, Meier’s patients face a formidable array of barriers to care. “They’re short on time, money and gas,” she said. “It’s hard for them to get to us. If a mother doesn’t drive or have a decent car, she has to bring her child to us by bus, adding hours of travel time to her already over packed day. We’re expanding our clinic locations to make transportation less of an issue.”
Then, there’s the language barrier. Meier sees large numbers of families who have limited knowledge of English. The hospital provides interpreters for all who need them—but there’s always a risk that critical information will get lost in translation, she said. Medical language also can add a layer of confusion for parents as they struggle to understand their child’s needs and follow their doctor’s treatment recommendations.
Culture comes into the picture as well, she said: “Here’s just one example: Devout Muslim families pray six times a day, and they’re required to wash their hands before they pray. That’s a lot of irritation for little hands with eczema.
“At the hospital, we do our best to be sensitive to cultural and religious traditions while helping families learn to deal with their child’s eczema gently and effectively,” she said, stressing the importance of consistent skin care.
“Low income can be the toughest hurdle of all,” Meier added. “Many of our parents can ill afford to take time off work, and they’re also under constant pressure to pay for gas, copays, specialty soaps, creams and medications”—necessities that can seem like luxuries when you barely have enough money to put food on the table.”
But despite these many obstacles, many families receive the care they need at Seattle Children’s, thanks to dedicated professionals like Meier and her team. “Eczema becomes more manageable over time. When a baby under our care starts to thrive, the sense of relief is palpable. Each step is a small win, and in time these can add up to become a major victory.”
In addition to a great health care team, a solid support system is key to successful parenting, LeBovidge said. That support can come in the form of an extended family, friends, community resources or, optimally, all of the above.
“Think of NEA as part of your extended family,” she tells her patients. “Take advantage of their website and use their new provider directory to find a specialist. And take advantage of the greatest benefit of all: When you join the NEA family, you’ll never need to feel alone again.”