The NEA research team has published its latest paper on the out-of-pocket (OOP) costs of atopic dermatitis (AD) in the U.S. — this time examining OOP costs among caregivers of children with AD compared to adults.
Published On: May 26, 2017
Last Updated On: Jul 15, 2021
Joanna Dobos is the mother of four sons who have severe eczema. While her children face various challenges in managing their eczema symptoms, she has also focused on their self-esteem. “It is very important to help my boys learn to accept themselves,” she said.
Last spring her youngest son asked her to buy more of a pair of long shorts that covered the area behind his knees because, “I’m trying to cover up all the parts of me that people don’t like,” he told her. Joanna said, “As a mother, I was devastated.”
In September, NEA announced the results of a survey of parents and caregivers of children with eczema that indicated that at least one in five children with eczema, including those with the chronic form known as atopic dermatitis, have experienced bullying at school because of their disease. Children with eczema often must cope with a lack of understanding and fear from their classmates. Teasing, taunting or bullying related to their appearance can lead to isolation.
“Medically treating and managing eczema is important – but so are understanding and addressing the psychosocial challenges of this disease,” said Amy Paller, M.D., Director of the Northwestern University Skin Disease Research Center. “The recent NEA survey correlates with research I’ve co-authored in the past, showing a link between bullying related to chronic eczema and a decrease in self-esteem and self-confidence. This can have a tremendous long-term impact on their lives.”
Joanna’s 9-year-old son, Jonah, who is in third grade this year, has experienced what he calls “annoying” questions from classmates about his eczema. He tells them, “I just say it’s a skin disease and it’s not contagious.”
In addition to supporting her children at home, Joanna is also a special education teacher in Casper, Wyoming, and understands how important it is for children to know that their teachers can give them the help they need to manage a chronic condition.
The Eczema: Tools for School Guides provide information and advice to foster a positive experience for children with eczema, including strategies for raising awareness of eczema in the classroom, 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. An educator guide also offers a useful work page for teachers and parents to develop an action plan to support students with eczema at school.
“The Tools for School guide is really helpful because it gives some of the words to parents that they may need to communicate with teachers,” said Joanna.
Joanna tries to make sure her children understand the importance of looking beyond physical appearance. “Celebrate the individual gifts your child has,” she said. “Having their own physical challenge has helped my children to be more compassionate toward other people.”
You can download the Eczema: Tools for School guide here, and watch Joanna tell her story, below.