Amy Paller MDJoanna Dobos, a mother of four children with severe eczema, says her youngest son was getting dressed one morning and commented that he liked the shorts he was wearing because they were longer and covered his knees. He asked his mother if she would buy more of them, because, he said, his knees were the worst part of him, and he was trying to cover up all the parts that people don’t really like.
“As a mother, hearing my son use the words ‘worst parts of me’ and ‘parts of me people don't like,’ I was devastated,” Dobos says. “Growing up is difficult as it is. Eczema has added some additional discomfort to that. But knowing that my child is carrying shame over things he can't control is especially difficult.”
Her boys are bothered by the many questions kids ask about their skin, Dobos says.
“…they get tired of explaining why they look so different. Jonah [one of her sons] has recently shared that students tell him he looks like an ‘old man’ because his skin is ‘weird,’” she says.
Bullying a common problem for kids with eczema
A survey released in early September of 480 parents and caregivers by the National Eczema Association (NEA) suggests Dobos and her children are by no means alone. In fact, 22% of respondents who care for children with mild to severe eczema, indicated their children experienced bullying at school, during extracurricular activities or with friends during the last year because of their eczema.
The survey defines bullying as repeated, aggressive behavior by school-aged children. It can be verbal, physical or social abuse, which can lead to social isolation.
Among those who reported their kids had been bullied, 77% said their children had lower self-esteem because of the bullying. Thirty-seven percent of the children reported inability to focus in class. More than 40% said the bullying made them less interested in sports and social activities.
But according to dermatologist Amy S. Paller, M.D., M.S., the findings that surprised her most were that 54% of those caring for bullied children with eczema reported their children weren’t as happy; 40% said these children lacked interest in managing the skin disease.
Dr. Paller, professor and chair of dermatology at Northwestern University Feinberg School of Medicine, Chicago, a pediatric dermatologist at Ann and Robert H. Lurie Children’s Hospital of Chicago and an NEA scientific advisory board member, says while was she aware that eczema has a stigma and children suffer with more than the itch and discomfort, it was sobering to see the high percentages of children whose self-esteem and happiness levels were affected.
“This survey really highlights that we need to be thinking about this in our kids with eczema,” Dr. Paller says.
Those caring for children with eczema say a lack of understanding about the disease is widespread. According to the survey, more than half of parents and caregivers reported that they believe their children’s teachers don’t understand eczema. Nearly 40% said they don’t believe their children’s doctors understand how to treat the skin disease.
Next: How derms can help
What derms can do
Dr. Paller says that drilling down into whether a child is suffering emotionally, socially and at school with eczema isn’t easy, but it’s important.
“We don’t have a lot of time with our patients, and we spend a lot of that time educating them about how to manage their eczema,” Dr. Paller says. “But we also need to step back and make sure that we manage this well for the whole child. That means that in addition to asking about sleep and how it’s disrupting the child and the family and the itch, we need to think a little bit more about the social impact of this disease. That includes asking [pediatric eczema patients] about their relationships with other children and specifically asking the parents if they know about any bullying. That’s a little bit sensitive, but particularly for some of the younger children, it really can have a terrible early impact. It should be part of the discussion.”
Dermatologists who find out their patients are getting bullied can use the survey findings to educate parents and children that they’re not alone. And to help teachers and parents develop an action plan to help children with eczema, the NEA offers this free resource: Eczema: Tools for School Guides
. The guides offer strategies for raising disease awareness in class, recommendations for building an eczema school care kit and a list of books and movies aimed at raising self-esteem, promoting positive thinking and encouraging understanding of people who are different, according to NEA. The educator guide provides a work page for teachers and parents to develop an action plan to support the student with eczema at school.
Joanna Dobos and son, JonahDobos says it’s important for teachers, parents and dermatologists to work together when preparing for school. For example, she says she tries to prepare her boys for flare-ups ahead of time by having moisturizer at school--either in the office or classroom.
“Dermatologists need to realize that children are often in more than one location, so they need ointments that they can keep at home, school and in their athletic bags. Prescriptions need to be written keeping in mind that there may need to be one tube at home and another at school,” Dobos says. “We try to plan a daily ointment time with the teacher every school year. Unless the time is scheduled and part of the routine, it is often overlooked. We have found that the easiest times to remember are during the transitions to lunch or recess.”
Awareness is key, Dobos says.
“We have been blessed with teachers who are aware and alert, and who help the boys …. Often, when other students understand that the boys are not contagious and that we all have our differences, they are much more accommodating,” Dobos says.