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: Feb 27, 2019
Last Updated On: Feb 27, 2019
If you weren’t able to make it to Eczema Expo ’18, we understand. Things come up. Priorities shift. Life has a funny way of throwing wrenches into your plans. You’ll come next year. We totally get it.
But we must apologize in advance if you wind up with a bad case of FOMO (fear of missing out). After all, this was no ordinary eczema conference. For many of the 400+ people who attended, it was a life-changing event.
For those who didn’t get the chance to attend this year, here are four things you missed.
The who’s who of eczema research and care came prepared to share everything they know about the latest treatments, research and alternative therapies, and to offer their best tips on skincare, sleep, mental health and more.
Dr. Elaine Siegfried, professor of pediatrics and dermatology at the Saint Louis University School of Medicine, brought us back to the basics with everything we need to know about living with eczema. She discussed the causes and triggers of eczema, as well as new treatments on the horizon.
Siegfried said never to trust “Dr. Google,” because “the internet is like a flea market. Trying to sort out the trash from treasure is really hard. What you read about on the internet is usually geared toward selling you something. It’s best to find a trusted professional to talk things through with.”
Susan Tofte, who is a dermatologist nurse practitioner at the Oregon Health and Sciences University’s Department of Dermatology and co-founder of the National Eczema Association, pulled out her best tools from her “eczema toolbox” with regard to bathing and moisturizing, reducing inflammation, and the correct way to apply topicals and take medications.
Dr. Jonathan Silverberg, assistant professor of dermatology, medical social sciences and preventative medicine at Northwestern Medicine, who specializes in eczema comorbidities and quality of life, walked us through the genetics of atopic dermatitis along with environmental factors that contribute to flares.
Silverberg’s presentation broke down in layman’s terms how new treatments, such as JAK inhibitors and biologics, treat eczema from the inside-out.
Affectionately known as “The Godfather of Itch,” Dr. Gil Yosipovitch, professor of dermatology and director of the Miami Itch Center at the University of Miami, shared cutting-edge research on the neuroanatomy and neurophysiology of itch, discussed new therapies that target the neural system and offered his best remedies to help lessen the intensity of eczema itch. The trick, he said, is to keep skin moisturized and stress levels down.
Jennifer Moyer Darr, licensed clinical social worker at National Jewish Health’s Division of Pediatric Behavioral Health, captivated the audience with her presentation on eczema and the toll it can take on our mental health. Later that day, she led a soothing relaxation session that gave attendees new coping mechanisms to gain control over depression, anxiety and stress. Here’s a hint: it’s all about self-care.
Sleep doesn’t come easy when you have eczema or a child living with the disease, and sleep deprivation can lead to a host of emotional and physical ailments. Thankfully, Dr. Lisa Meltzer, director of the Pediatric Behavioral Sleep Clinic at National Jewish Health, was on hand to explain the science behind sleep and what we can do to ensure a restful slumber.
Internationally renowned dermatologist, and fan favorite, Dr. Richard Aron flew in from South Africa to present on the Aron Regimen, stunning audience members with his before and after pictures of patients treated with compounded antibacterial, steroid and moisturizer (CASM).
Aron shared the stage with Dr. Peter Lio, clinical assistant professor of dermatology and pediatrics at Northwestern University Feinberg School of Medicine, who discussed other patient-powered therapies from elimination diets to cannabis.
Melissa Thomson traveled from the land down under to meet Dr. Aron in person. “That first hug with Dr. Aron is up there with the best moment of my life and a very emotional one,” she said.
“Only an eczema parent whose child has been healed would understand how significant this moment is. Dr. Lio was another highlight for me, as I follow his research closely from across the world. The motivation and inspiration I have taken from this event, I believe, will assist me to help Australians move forward with eczema care.”
What can we say, we love to spoil our friends in the eczema community! This wasn’t your average expo—it was more like a wellness retreat exclusively for Eczema Warriors and their biggest fans.
NEA took great pains to ensure guests felt as pampered as possible from the choice of location (a four-star hotel situated on Chicago’s scenic river walk), to the bleach bath and wet wrap kits awaiting them at the front desk, to the “Yes, I’ve tried coconut oil” T-shirts that made folks giggle out loud.
Each morning, guests had the option to take an “eczercise” class that offered “no sweat” workout alternatives crafted by a certified personal trainer.
Alternatively, they could take a soothing yoga class modified for yogis of all levels by Chicago-based certified yoga instructors Eunice Yu, a former educator and therapist, and Jennifer Jenkins, an Eczema Warrior also known as “The Allergista.”
Or they could attend a guided mindful meditation session led by Yu or pediatric occupational therapist Jacyln Stillmaker, who specializes in yoga for children and teens.
In between seminars and breakout sessions, guests could visit with exhibitors and try samples of the latest products and therapies to help them live their best lives with eczema.
If their skin was feeling parched, they could slather on lotions and ointments at various “moisturization stations” featuring products from Expo sponsor Theraplex.
Chicago-based certified acupuncturist David Kato was also on site to offer complimentary 20-minute acupuncture treatments.
For those who needed to rest, reflect or recharge, there was a serene space called “The Living Room” stocked with eczema-themed coloring books and crafts.
Another popular space was the photo booth with a green screen where guests could incorporate silly props and make funny faces in front of the Chicago skyline.
There was even a video confessional set up in a private setting where people could share their stories or speak candidly about their concerns, ideas and experiences.
A wellness retreat wouldn’t be a wellness retreat without delicious health food to nosh on. Eczema Warrior and whole food enthusiast Tara Tom collaborated with Chris Rolewicz, executive chef at Westin Chicago River North, to create an allergy-friendly, nutrient-dense menu that made adults and kids alike return for second helpings.
The menu even got a seal of approval from The Allergista herself. “The food was great, and I love how the ingredients were listed next to everything,” Jenkins said. “It’s all in the details!”
If you think a summer camp for kids and teens with eczema sounds boring or lame, you couldn’t be more wrong! Our carefully planned, superhero-themed Kids’ Camp (for kiddos aged 5 to 12) and Teens’ Camp (for teens up to 17 years old) was chock-full of entertaining activities in a bully-free zone.
From creative projects and action-packed outings to age-appropriate educational sessions, every aspect of this three-day adventure was designed to boost self-esteem and leave our junior Eczema Warriors feeling empowered to live their best lives.
Day one was all about being a silly superhero, with a photo booth set up for the kids to take funny pictures with props, and the chance to get to know each other over superhero-themed games and crafts.
Camp coach Ashley Lora, who grew up with severe atopic dermatitis, led the kids and teens in an all-ages vision board exercise to help them picture their best lives. After lunch, the group ventured out to 10Pin Bowling Lounge for healthy snacks and unlimited rounds.
Later that day, Stillmaker discussed the importance of fitness for both body and mind, and led the group in a flare-conscious, stress-reducing yoga session.
On day two, our campers hit the town again for a customized scavenger hunt in Chicago’s scenic River North neighborhood. Yu led the group in an exploration of eczema and self-identity to help kids and teens identify alternative methods to manage stress and anxiety.
After more superhero-themed crafts and games, the kids settled in for an allergy-friendly dinner and movie night, while their parents let loose and danced the night away upstairs at the NEA Ecz-travaganza cocktail reception.
Day three of camp kicked things off with an hour-long skincare demonstration that showed kids and teens how to care for their skin at school, at home and on the road. After more superhero-themed games, crafts and photo opps, the group exchanged contact info with their new besties and closed out the weekend with a special presentation that left adult attendees nothing short of impressed.
“My favorite part about teen camp was meeting new people and not feeling like I was being looked at all time,” said 16-year-old camper Kyle Bruner who traveled from Sarnia, Ontario, Canada, with mom Jenn Johnson and older brother Tyler.
“I loved learning new ways to work out and getting to see the Chicago sights on the scavenger hunt. Best of all, my brother understands my pain a bit more and learned different ways to help me with my eczema.”
“Our 11-year-old daughter Genevieve has grown up not knowing any other children affected by atopic dermatitis,” said Lisa Thomas of Baraboo, Wisconsin. “She had so much fun at camp (she says her favorite part was the crafts), and now feels much less alone and ‘different.’
“We are also noticing an increase in her self-confidence. She proudly wears her official Eczema Expo backpack and buttons wherever she goes and is more comfortable speaking with others about her condition.
Each day at Expo, there were three 30-minute breakout sessions covering any and every topic related to eczema, and guests had unlimited choices as to which breakout sessions they wished to attend.
There were professional and peer-led support groups designed to address all aspects of life with eczema from infancy through the golden years, including how it affects our relationships and body image as a male or female; what it’s like to parent kids and teens with eczema; and how life is affected when eczema strikes key parts of the body such as your hands or face.
There were hands-on trainings in skincare, storytelling and fitness from the eczema experts.
There were idea exchanges on hot-button topics, such as allergy-friendly eating; biologics for kids and adults; complementary and alternative treatments; how to participate in a clinical trial or research; tips for navigating the insurance marketplace; hair, makeup and other grooming challenges; and how easy it is to become a grassroots eczema activist who can help influence legislators and shape policies that will improve the lives of all people living with eczema, not just a privileged few.
“My biggest surprise was how emotional some of the sessions made me,” said Thomas. “Seeing photos and hearing the stories of other children and adults doing battle with the disease often reduced me to tears. It made me realize that my husband and I were also extremely isolated. Being with others who ‘get it’ helped me work through a lot of feelings, and I returned home feeling lighter and more empowered.”
“My favorite part about Eczema Expo was being around a community of people that got what we were going through,” said Lauren Swallow of Quincy, Michigan. “Our son is 3-and-a-half, so for the past three years, my husband and I have felt totally isolated dealing with this disease.
“Until Expo, we had never met another family whose child has eczema or just a person in general with it. It was almost a culture shock (in the best way possible!) when we first arrived. But, we began feeling a sense of belonging, support and bonding with the families there. To be able to complain, cry, laugh and support each other was everything to us.”