It's been one year since NEA, in collaboration with four peer patient advocacy organizations, hosted the landmark patient-focused drug development (PFDD) meeting dedicated to eczema.
Published On: Aug 12, 2019
Last Updated On: Aug 25, 2020
More than 31 million Americans have some form of eczema, including nearly 10 million adolescents under age 18 with atopic dermatitis (AD). But teens dealing with skin conditions during the most vulnerable years of their lives often feel like they’re facing it all alone.
“I’ve never known anybody with eczema besides myself,” said Silvia Miyares, a 23-year-old public relations publicist from Chicago who’s had eczema since she was born. “Having something that you’ve never seen on anybody else is really hard, so it was difficult growing up. I felt very isolated.”
Isolation is a common struggle for teens with eczema, even though millions of people have traversed that tricky stage of life before. To help teens with eczema better understand and manage their condition, the National Eczema Association is ramping up its efforts to serve and support eczema warriors of all ages.
“NEA has always wanted to engage our teen population and address the needs that are unique to them,” said Jessica Bartolini, manager of community engagement.
“We want to make sure that we’re providing the support, resources and education they need. We could have made assumptions about what that included, but we wanted the teens to tell us what they really want and need to manage their eczema.”
Last August, NEA put out a call-to-action for teens and young adults interested in joining its Teen Engagement Program Steering Committee to help guide and influence a Teen Engagement Program. The response was overwhelming as teens (and former teens) jumped at the opportunity to share their eczema journeys.
“The statistics show that there’s millions of people with eczema, but most kids my age that live with severe eczema feel like there’s no one around them that they can talk to,” said Harry Do, a 23-year-old from Gainesville, Georgia, who was diagnosed with eczema shortly after birth.
“I decided to get involved with the Teen Engagement Steering Committee because I wish I had someone there for me who knew what it was like living with eczema when I was still in school.”
The steering committee has a total of 16 members ranging in age from 12 to 23, all living with eczema. Here’s a sneak peek inside some of the committee members’ stories and how they’re shaping NEA’s new Teen Engagement Program.
Growing up, when Ryland Mortlock went to the pool with his family, other parents worried that the rashes on his skin were caused by a contagious disease that their kids might catch.
“It’s surprising because it’s such a common condition. But most people don’t have experience with moderate-to-severe eczema,” said Mortlock, a 21-year-old who grew up moving around the country as part of a military family.
Mortlock was about 9 years old when he and his mom attended an Eczema Expo where they met other eczema families with similar experiences. As he grew up, he continued reading NEA’s newsletters and magazines. When he saw the CTA for Teen Steering Committee volunteers, he responded right away.
“When my eczema started (flaring up) in college, I was looking for a way to get involved again, and the Teen Engagement Program looked like the perfect opportunity,” said Mortlock, who just graduated from the University of Southern California with a degree in biochemical engineering.
“On one hand, I wanted to meet people with a similar experience and learn from them. And on the other hand, I want to share my own experience. Having gone through the transition to college and [learning to] manage eczema on my own, I hope I can be a mentor to help guide [other teens] as they face that transition.”
More than a dozen teens and young adults like Miyares, Do and Mortlock formed the initial Teen Steering Committee. Using the GroupMe messaging app to communicate remotely, the group convened three times in late 2018 to discuss various aspects of life with eczema.
“NEA sent out questions and polls like, ‘What are some of the triggers of your eczema?’ or ‘What are you doing to manage right now?’ and it’s been really cool to hear other people’s stories,” Mortlock said. “Just knowing there’s this diverse group of people from all over the country going through a similar experience helps put it in perspective.”
The group chatted about everyday issues like how to play sports when sweat can trigger flares, and how to manage treatment routines and the side effects that can accompany medications.
“I could relate to a lot of the issues other patients were going through,” says Jaeyon Yeo, who will turn 18 and graduate from high school this year.
“A lot of girls, especially, go through a period of being self-conscious about eczema because our society idealizes a specific type of body image. I was able to connect with other girls in the group who were also struggling with that, so it felt like I wasn’t the only one going through it.”
For many of the committee members, this forum was the first platform they’ve ever had to openly communicate these struggles with full transparency. Through their online interactions, they shared advice and encouragement—even “celebrating each other’s milestones and achievements in school,” Do said—to help boost each other through the daily struggles of living with eczema.
“Being around other people who understand eczema is very validating because most people don’t understand it,” Mortlock said. “When you’re starting from the same page, you can start having productive conversations about treatment and support, and you can learn from other people’s experiences.”
Based on the Teen Steering Committee’s input, NEA developed a set of personas to capture the typical experiences of teens with eczema.
“The personas serve as guideposts as we start to think about what resources, support and education NEA wants to provide for this demographic,” said Bartolini. “As we move forward with tangible programs for teens, we’ll be tapping the steering committee for their thoughts and ideas. We want this to be a program built for teens by teens, so we’ll continue to lean on them for their expertise.”
The first step will be to update NEA’s website with dedicated content and resources designed specifically for teens and young adults, addressing topics like dealing with eczema at school, being in relationships, and how to transition into college.
“We want to have teens contributing more by posting blogs or writing for the magazine,” Bartolini said. “We want to activate teens to feel empowered to share their stories and come into their own as eczema warriors.”
In other words, NEA wants to give teenagers a voice and a platform for sharing their eczema experience with other teens who feel alone.
“What I’ve gotten out of (the Teen Steering Committee) is that I finally found a group of people who understand me, and it has sparked my interest to be a voice for those who are embarrassed to talk about it,” Miyares said.
“It’s pushed me to be more knowledgeable about my disease, and stronger and more confident. For teens living with eczema, even if they were just like me and didn’t know anybody else with this problem, I want to contribute more visibility so they know they can get help.”
Several committee members plan to meet in person for the first time at Eczema Expo 2019. This summer’s event will offer more breakout sessions and other resources dedicated to teens with eczema, “based on what we’ve learned about them through this steering committee,” Bartolini said.
Eventually, NEA plans to develop some type of teen support network where teens can share encouragement and advice like the steering committee has done—letting kids know they have somewhere to go “so they don’t feel as alone in this disease as they often do,” Yeo said.
“That feeling of being alone in this disease makes you feel very self-conscious, but when you’re in a community of people who experience the same issues and support you, it helps you feel more confident with the skin condition you’re born with,” Yeo said. “I just want to tell [other teens] that they’re not alone. There are so many other teenagers out there struggling with this, and if you want to reach out, you can.”
Ryland Mortlock, 21, Los Angeles, California: “Lean on others for support and try to stay positive through it all.”
Harry Do, 23, Gainesville, Georgia: “On the toughest days of your life when you want to give up, just having 1 percent of trust and belief in yourself will get you through more than you can ever imagine. The battles you face now while living with eczema can only make you stronger.”
Jaeyon Yeo, 17, Rochester, New York: “Have confidence in it. Through eczema, you can grow more as a person and learn to reach out to other people through the disease. If you’re confident with yourself, you’ll be able to live your life in a happier, more positive way. Be happy that you’re able to experience this because you can learn so much from it.”