Gymnast Suni Lee plans to defend her Olympic gold medal this summer in Paris, but first, she took time to participate in a panel discussion on a topic that has plagued her for several years: atopic dermatitis, or eczema.
The 21-year-old American joined National Eczema Association President and CEO Julie Block; Mount Sinai Dermatology Faculty Practice Medical Director Alexandra Golant, MD; and Lilly Immunology Development Senior Vice President Mark Genovese, MD, to discuss living with eczema and spreading awareness.
“I had eczema for a really long time,” said Lee, who is partnering with Team USA health equity sponsor Eli Lilly and Company. “It started when I was really young. My skin was always super dry, super flaky. It was really uncomfortable because it was really itchy. … My doctor sent me to a dermatologist, and that's when we got my diagnosis and we found the right treatment plan, so now it's way better.”
Lee said her eczema flareups were particularly distressful because she competes in a leotard in front of large crowds.
“Being on a competition floor, having so many eyes on you and just trying not to be worried about if people are looking at my skin, or itching myself, because the more that I itch myself, the flakier it's going to get, the drier it's going to get,” she said. “When you're competing, there's not much that you can do. My dermatologist has definitely helped me kind of figure that out, so when I'm competing, I don't have to worry about it as much, but I think I've just also learned to be so much more comfortable in my skin to where I've just realized that … a lot of people have to deal with it, and I'm not the only one.”
Golant said Lee’s challenges are common, other than the parts about competing in front of large crowds.
“Oftentimes, eczema does have a childhood onset, but really, we see patients quite frequently that may have onset later in childhood and early adulthood, or even in later adulthood at times,” Golant said. “The symptoms that Suni describes or remembers experiencing really resonate with what we hear from so many of our patients. Oftentimes, there's a skin component that can be redness, that can be flaking of the skin, that can be skin discomfort, and it's almost always accompanied by a really relentless itch that these patients suffer from. The combination of both the skin lesions and the itch gets a lot of these patients stuck in something that we really refer to as the itch-scratch cycle. As we become itchier, we tend to scratch our skin, and that alone, unfortunately, perpetuates creating more inflammation in the skin and therefore more itch and more skin lesions for these patients. … A real hallmark of this disease is that kind of ebb-and-flow cycle of these periods of flares or exacerbations and periods of clearance. But for many patients, even in a period of relative quiet of their skin, there's this psychological component … this anticipatory anxiety around when the next flare will come.”
Block echoed Golant’s points about the psychological factor.
“We've done a lot of research in this area about the emotional and physical impact of the disease, and I really appreciate Suni bringing forth the message that you're not alone and nobody should ever feel alone with this disease,” Block said. “We've learned that, in fact, more than half of the people with moderate to severe eczema have indicated that the condition severely limits their lifestyle. And we know also for people with mild disease that it affects their lifestyle and limits some of the things that they can do. What we say about eczema is that it may not be life-threatening, but it absolutely can be life-altering, and there are ways to manage it, of course, but accepting and appreciating the impact [is important].”
Block added that people with eczema need to acknowledge the chronic nature of the condition while also remaining optimistic about the treatments and modalities for managing it.
Golant noted that the first questions patients typically ask include inquiring whether it is curable and how long treatment will be required.
“The answer is: There is no cure for eczema,” Golant said. “This is, for many, a chronic condition, just like we manage many chronic conditions. But … this is an exciting time to have atopic dermatitis because, for the first time, really, in the last several years, we have these new tools in our toolbox where we can arguably get you just about as clear as you want to be for most of our patients. That affords patients a really incredible improvement, many times, in quality of life. My goal for my patients, I always say, is to have your life not dictated by your atopic dermatitis; you should live your life, really, as if you do not have atopic dermatitis.”
Many of those new tools are listed and explained on the National Eczema Association’s website.
“You're going to read stories, listen to podcasts, join webinars, and you're going to hear your story,” Block said of nationaleczema.org. “You're going to hear Suni's story; you're going to hear another story that you can relate to, so you have connection. You are surrounded by a community that understands and can support and can help.”
Lee says that is the most important thing, and why she chose to share her story.
“It can be kind of isolating when you deal with eczema and having an eczema flareup,” Lee said, “so I just want people to know that you are not alone and it does not define you. I think that when you deal with it and you're constantly looking down at your skin, you probably think, ‘Oh, other people are looking at it and staring at it.’ But, in reality, I don't really think anyone's looking that hard, and it's OK.”