Addressing Lack of Atopic Dermatitis Education

Raj J. Chovatiya, MD, PhD: I’ll throw it over to Korey, as someone who advocates for patients with atopic dermatitis. Taylor and Tina raised a couple of interesting points. How do you address that lack of understanding about symptoms and treatment for atopic dermatitis among the public?

Korey Capozza, MPH: Thank you, Tina and Taylor, for sharing your story. Before I jump into that, I wanted to offer a quick comment on your story because it’s familiar to me. I have a child with moderate to severe eczema. You’re talking about the pain of getting in the ocean and all these things. It reminded me of a lot.

One thing I wanted to call out—because it’s not just their experience, it’s everyone’s experience when you have a child with more severe eczema—is that you don’t know where the next trigger is going to be. It could be anywhere. It could be in the lake water or at your friend’s house. There’s this narrowing of horizons that happens because you’re trying to avoid being thrown into a flare. It could be a scented candle or something you ate. You have to live in high alert in that way and always be wondering if you’re going to enter some situation where there will be a trigger that comes back to haunt you.

In our own data, we see some of the survey work that our organization, Global Parents for Eczema Research, has done. There’s a narrowing of horizons that happens for children and families as you try to protect yourself against exposures. That translates into a different life from what you would’ve planned. It’s so important to get eczema stabilized and under control so that these children aren’t in a hugely allergic state that makes them so reactive to everything around them.

To answer your question, which was about changing public perception about this condition, there are a couple of challenges. One is that eczema is very common, but the common form is mild. It’s commonly misunderstood to be just a baby rash: you put on a little Vaseline or over-the-counter cream, and it goes away. The moderate to severe form is much less common. People have less connection to it or understanding of it. What’s lacking is an understanding of the range of symptoms that can come with this umbrella term that we use to describe eczema. In a lot of ways, the moderate to severe form of eczema is almost a different condition entirely from mild eczema, which does not turn your life upside down and does not turn the family’s life upside down. Part of it draws this distinction between mild eczema, which is usually a fairly mild experience, and moderate to severe, which can be life-changing. That’s No. 1.

No. 2, a lot of the impacts are hidden from people. They happen in the home. It’s these mental health adjustments that we go through, like foregoing social activities. All these things we do to cope with eczema when it’s more severe, nobody sees. Nobody sees the parent with a young child up all night for months, for years. Those are quietly in the home. Organizations like ours have worked to bring those to light to people. Patients can share their stories to show the true impact of the condition and what they’re up against so we can bring more attention to it, accelerate new treatments for kids, and increase funding for research in this area. It’s something we all need to engage in. Organizations like ours are working hard on this.

Raj J. Chovatiya, MD, PhD: Thank you for that complete answer. It underscores that even though most of us in the medical community think about this as a medical condition that we deal with, there’s an umbrella of burden that’s arguably more defining and important to the disease than anything else.

Transcript Edited for Clarity