Look up at the sky. Is it a bird? No. Is it a plane? No. How about a drone? Those are popular these days. No, it’s you! Sure, you may not be wearing a cape or be able to shoot laser beams out of your eyes. But we see you. You are the millions of people around the world who are living with eczema. To us, you are superheroes.
We know how difficult it is to fight symptoms of this disease, but every day you come out stronger and wiser than the day before. Individually, you might worry that you’re the only person who understands what it’s like to have eczema. But when we join forces as a community, we have superpowers.
That’s what Eczema Expo ’18 was all about: connecting with others around the world who share one dry, red, itchy, irritating thing in common. Whether you were a patient, parent, sibling, spouse, friend, doctor, researcher or caregiver, you brought your own eczema journey to Chicago and left with a renewed sense of community.
Here’s a handful of the folks who made Expo ’18 go down in history as one of the best Eczema Expos ever.
Wife, mother and eczema advocate Renee Dantzler has been to nearly every Eczema Expo since the event started back in 2005. This year, the Dantzler family—Renee, husband Anthony (Tony for short) and 18-year-old daughter Jasmine—traveled from Clinton, Maryland, to Chicago together. All three agreed that this was the best Expo yet.
Mainly, said Dantzler, “there was more of everything: more millennials, more people generally, more presentations, more to learn and more to enjoy.” And, she added, NEA paid more attention than ever to the little things that make a big difference: a photo booth, little moisturizing stations and workshops on every topic under the sun.
The Dantzlers benefited greatly from the session on sleep disruption, a major bugaboo that every eczema family has had to face at one time or another. The Dantzlers faced sleep deprivation big time when Jasmine was a little girl, especially during the period spanning age 4 to 11.
Jasmine Dantzler, a talented singer, actress and all-around effervescent young woman, hit her stride at this year’s expo as well. “All these years, she was a camper at the Kids’ Camp, but this time around she worked as a counselor,” her mother said. “She has come a long way! My daughter has a lot to give, and NEA has helped her find ways to give it.”
For 26 years, Atlanta-based Kelly Barta managed her condition with topical steroids. She decided to wean herself off topical steroids after a round of online research advising against their long-term use. But soon after, she was assailed by violent burning, itching and red skin. For well over a year, she was bedridden, saddled with “burning, oozing and bone-deep itch.” She lived between her bed and bathroom, and sleep was a scarce commodity.
She found her way to the International Topical Steroid Addiction Network (ITSAN), a nonprofit that raises awareness about a condition called red skin syndrome, also known as topical steroid withdrawal syndrome. She has since become president of ITSAN, allowing her to advocate for herself and others who have experienced the effects of topical steroid withdrawal.
“Not everyone reacts this way to steroid use,” she said, “but even most doctors don’t recommend using them long-term. Steroids have amazing properties, and they can really help people. What we need is a balanced view of how to use them based on solid research.”
One of Barta’s “overarching takeaways” from this year’s expo was “the sense of community and family. It was amazing to see parents with little kids who had full-body eczema. I know the stress and the emotional toll that can take.
“And I see the kids thinking, ‘How are other people going to perceive me?’ But by the end of the weekend, their whole expression had changed. Some of them trickled into the adult dance party on Saturday night and danced like crazy. It was as if they were living out their joy!”
JENNIFER JENKINS AKA “THE ALLERGISTA”
You’ve probably heard the expression “turning lemons into lemonade.” That’s precisely what Jennifer Jenkins did when she found out she had eczema and severe allergies. After a year-long rollercoaster ride of medical appointments, Jenkins was diagnosed with allergic contact dermatitis and atopic eczema in 2010.
A routine patch test had led to the discovery of nearly two dozen allergies, forcing Jenkins to make significant lifestyle changes to better fight her disease. “In the beginning, I really wished I had someone who could tell me how to get around touching doorknobs, how to deal with only being able to wear cotton clothing (I love fashion) and the zillion other situations I come across,” she said.
So, Jenkins did what any smart, savvy Millennial would do. She made it her business to motivate and inspire others to live happier, healthier lives with eczema. She dubbed herself “The Allergista” and launched a lifestyle brand offering tips to better cope with eczema and allergies. After gaining a loyal following, The Allergista reached “social media influencer” status and now vlogs (video blogs) about new eczema products.
Jenkins played a fundamental role at Expo ’18, leading yoga and meditation classes and hosting breakout sessions at the event. “Hands down, my favorite part about the expo was the breakout sessions. I led a couple including dealing with eczema in your 20s and 30s and one about beauty and grooming tips,” she said.
“The way that people opened up was incredibly touching. Tears were shed, and while that was happening, other people showed their support in such a genuine way that if I had any doubts about humanity, they were erased right then and there. On top of the breakout sessions, the speakers were incredibly informative and the Ecz-travaganza at the end was amazing!”
Fran Hunter, a first-time expo participant, has been a registered nurse for 51 years. She started out as a helicopter nurse, helping to transport patients from smaller hospitals to larger ones equipped to deal with emergencies and traumatic injuries. Nowadays, she’s a school nurse.
“I never had kids of my own, but I consider the 600 kids at my school ‘my’ kids,” she said. “Fifty of my kids have eczema. They cry, they bleed, they have crises. That’s why I asked my school to send me to Eczema Expo this year. I needed to find out more about the skin condition that makes my kids cry.”
Hunter met a lot of parents in Chicago this June. She already had some idea of how busy families can get as they strive to help their children deal with their eczema, from wet wraps to moisturizing to frequent medical appointments and sleep issues. “Now I understand why parents are so caught up in their kids’ struggle with eczema,” Hunter said.
From her experience at Expo, Hunter gathered lots of extra ways to help her kids back in St. Louis. She loved Dr. Gil Yosipovitch’s presentation, which clarified the seriousness of itch for her. “I’m hoping my school will empower me to do more for our eczema kids and their families,” she said.
Raelle Brown, another Expo first-timer, has had AD her whole life. She also developed severe seborrheic dermatitis—the type of eczema that targets the scalp—when she was in high school. “My hair fell out,” she shared. “And it has fallen out a couple of times since then, including recently. This time, though, instead of wearing a wig, I just cut it all off and let it grow back naturally.
“I thought I knew everything there was to know about eczema, having dealt with it my whole life,” she added, “but I learned a whole lot more at Expo ’18.”
The highlight for Brown? “The reassurance that I’m not the crazy one—that I’m not alone. I’ve been through it all—the effects of eczema on my emotional, neurological and physical health, and on the health and well-being of my family. I learned that all these things have been studied.”
The presentations from Dr. Richard Aron and Dr. Peter Lio, in particular, “blew my mind,” she said. “It was an out-of-body experience to hear them speak and see their slideshows, which showed exactly what I’ve been experiencing for so many years. They’ve been doing the research that will help me heal.
“When I asked a question during one of Dr. Lio’s sessions, I started crying,” Brown added. “I’m not usually a crier, but just saying it out loud caused all kinds of emotions to come out of me, seemingly out of nowhere. And then, most of the room started crying with me!”
DR. PETER LIO
We’ve all heard the stereotypes about doctors. From their impossible-to-read handwriting to the clinical, almost business-like nature of their bedside manner, we’ve come to love and respect society’s no-nonsense lifesavers. While we can’t speak for his handwriting per say, there’s something about Dr. Peter Lio that sets him apart from the pack.
The Harvard Medical School grad and faculty member returned to his native Chicago in 2008 to put worried parents at ease at Lurie Children’s Hospital and to serve as clinical assistant professor of dermatology and pediatrics at Northwestern University. In addition to being the founding director of the Chicago Integrative Eczema Center, he also serves on NEA’s Board of Directors and Scientific Advisory Committee.
Unlike most MDs, Lio incorporates his fascination with Eastern medicine into the Western medical field. He received formal training in acupuncture while at Harvard and openly integrates alternative and complementary medicines into his dermatology practice. His seminars and breakout sessions were the highlight of Expo ’18 for many attendees.
Plus, he’s just so darn likeable! Lio’s friendly demeanor and patient-centric approach to health care has made him a fan favorite in the eczema community. What were some of his favorite things about Expo? “I loved visiting the Kids’ and Teens’ Camp and spending some time with them talking about moisturizers and watching them work on cool projects and play together,” Lio said.
“I really loved the group sessions where we had deep discussions about some of the bigger questions. I got lots of input from many people, especially those who have been through a lot. I loved the positive energy that suffused the entire weekend. Everybody was there to support each other, learn and connect.”
“This was my first Expo but it won’t be my last,” said 25-year-old Lainie Seelinger, who came to the event from Detroit, where she works for an oral surgeon. She arrived with her mother and her fiancé, Jon—and all three had important roles to play at the conference.
“My mother went off on her own,” she said. “She was in a group for supporters and advocates, which allowed her to share what she has learned about raising a child with eczema. She did good! And Jon joined the sessions for caregivers. He shared what he knows—especially, the little things a caregiver can do that mean so much. His contributions made me feel so proud, loved and supported.”
Seelinger, who has had eczema since childhood, spoke about her favorite thing about Expo: the opportunity to “sit down and listen to the doctors talk about all the effects of eczema: physical, emotional and psychological. Dr. Lio was huge! He’s so knowledgeable! I could listen to him all day!”
In December 2017, Seelinger started on the first biologic approved for treating atopic dermatitis, and the results have been, in her words, “miraculous. I was in a major flare for about four years, starting in 2014, from head to toe. Now my skin is about 99 percent clear.”
Seelinger attended sessions for women and for people in their 20s. She was excited to be able to share her own success story with her peers. However, “I may be doing well on the surface, but I’m still the same person in my own head,” she admitted. “Old thoughts, fears and memories don’t go away just because my skin has cleared. I still need support. At Expo, I found the support I needed.”
Sarah Pry’s 10-year-old son, Aiden, has had eczema since infancy. It showed up when he was just 3 months old. Mother and son attended Eczema Expo this year, and both of them loved every minute of it. “Everybody was on the same page,” she said. “I took lots of notes!”
Before traveling to Chicago from Crossville, Tennessee, Pry had met up online with a Canadian woman whose son, Avery, had eczema and was the same age as Aiden. They decided to connect at Expo, and now they’re fast friends. “Aiden still talks to his new Canadian friend on the phone from time to time.”
Pry said she was happy to learn about Dr. Aron’s compounded cream and Dr. Lio’s research on Dupixent use in children. She also appreciated the “toolbox” session, where she picked up valuable tips on how to manage her son’s eczema: what to use and what to stay away from.
“What a pleasure to be with people who get it,” she said. “We were sad to leave! Aiden wants to go back every year.”
Expo photos courtesy of Tori Soper Photography