Waking up in the morning feeling ashamed or embarrassed by the appearance of our skin is a painful reality for the 16.5 million adults in America living with atopic dermatitis (AD).
Some of us feel compelled to cover up with long sleeves, pants, hats and gloves to hide the tell-tale markings of eczema from the rest of the world. That is what makes atopic dermatitis such an anomaly; it is one of the loneliest yet widespread diseases in America.
In early 2016, the National Eczema Association kicked off a three-part national study in partnership with the Asthma and Allergy Foundation of America, Sanofi Genzyme and Regeneron to determine just how widespread AD really is. Results of the study have been revealed throughout 2018.
The study found that 7.3 percent of U.S. adults have AD, and about 40 percent of them have moderate to severe symptoms, which include dry, oozing or discoloring of the skin, itch, pain and physical discomfort. AD causes sleep disturbances and can take a significant toll on a person’s mental health and self-esteem. More than 25 percent of the people who were polled rated their health as fair or poor.
Based on the results of our AD in America study, we’ve identified several data points that highlight the lesser-known facts about this disease. To help us illustrate these data points, we’d like to introduce six Eczema Warriors from across the U.S. who were brave enough to bring their AD out of the shadows and shine a light on the true impact this disease has on their everyday lives. These are their stories.
AD in America Fact: Nearly 1 in 2 adults avoid social interactions because of their appearance.
Living with atopic dermatitis has been a lifelong rollercoaster ride for 42-year-old Josh Chamberlain of Taylorsville, Utah.
“As a child, I had it moderately, but there were definitely moments when I looked and felt like a burn victim,” he described. “That can be frustrating for a kid, when you haven’t yet matured into life, and you don’t understand why your skin suddenly exploded into a fiery storm.”
Chamberlain remembers being too self-conscious by the appearance of his skin to date much in high school. “I avoided intimacy and shied away from relationships because I didn’t want to see how the girls would react to my nasty skin,” he said.
By the time Chamberlain graduated high school and met his first wife, “I was pretty much cleared up,” he said. “But then when we started having kids, and I was working a graveyard shift, the stress of being a new father seemed to bring it back.”
His skin finally started to calm down again by the time he reached his 30s. “I went probably seven to nine years where I hardly had any symptoms. It was the last thing I thought about. But right around the time I turned 39, it came back with a vengeance,” Chamberlain said.
With nearly 90 percent of his body covered in eczema rash, it was the most severe outbreak of his life.
“You put on the long sleeves, pants and hat, and do the best you can. But there were still times when it was shameful and embarrassing for me to go out in public,” he said. “When people stared at me, I could see the pity in their eyes, and that was the most depressing part of it for me. I’m a positive person who warms up to people quickly and easily, but I did not want to be social at all.”
After trying and failing various treatments, Chamberlain went on the first FDA-approved biologic for AD. “Bless my dermatologist. She’s done a good job to get me where I am now,” he said. “I tried so many different things. It feels like something will work initially, and then after about a month or so, my eczema would evolve and become immune to it. Today, I’m 98 percent clear and living my best life.”
AD in America Fact: Adults with AD have a significant mental health burden and are more likely to have symptoms of anxiety and/or depression.
Unless you have atopic dermatitis yourself, most people don’t realize the impact it has on a person’s mental health. Unfortunately, it’s common for people living with AD to experience stress, anxiety or depression as a comorbidity, or related health condition, of the disease.
That was certainly the case for 40-year-old Jenene Chesbrough of New York City. One of her earliest memories was when she was about 4 years old—writhing around in bed, screaming and crying because the eczema itch was so unbearable.
“My husband jokes that I should live in a bubble because I am allergic to the world,” Chesbrough said. “Grass, mold, fragrances, different water types when I travel—you name it, and I’m probably allergic.”
Exposure to mold is what set off one of the worst flare-ups of Chesbrough’s life. “It took years to bounce back from it. It affected my mental health in a bunch of different ways. I was a go-getter at work. I had goals that I wanted to meet. But I couldn’t sleep at all, which made it hard to function at work,” she said.
“I was in a client-facing role at my job, but I hated showing up to work looking like a burn victim. I had to go on short-term disability. I was starting every day off with depression, thinking, ‘This is never going to go away. There is no cure. Should I kill myself?’ It was very dark.”
In early 2016, Chesbrough was invited to participate in a clinical trial. “All of a sudden, I didn’t itch anymore. It allowed me to sleep. Sleeping allows your body to heal itself. You become a completely different person. You become a smarter person, a happier person,” she said.
Chesbrough offers the following advice for other AD patients who struggle with depression or anxiety: “If you feel isolated or alone, reach out to other people with AD through NEA. Also, check out mindfulness-based stress reduction techniques by Jon Kabat-Zinn. It helps you think less about the pain and itch,” she said.
“My last bit of advice is to stay hopeful. The hardest part of depression for me was feeling like there was no hope. But there are so many treatments now than there were five years ago, with more on the way. We are getting close to a cure, so there is hope!”
AD in America Fact: Although it’s more common for the onset of AD to begin in infancy, some adults with AD report onset after the age of 18.
Eczema is a lifelong journey for many people. It’s common to see signs of atopic dermatitis as early as infancy, and then it fluctuates throughout childhood on into adulthood. But for Mike Bristol of Longmont, Colorado, his first bout with AD began five years ago at the tender age of 51.
“I started to get some patches. They were itchy and weren’t going away on their own. I was using lotion and putting on homeopathic stuff, but it wasn’t working. Finally, I went to a dermatologist, and they said I had AD. It grew from there, covering different parts of my body at different times of the year. It just wouldn’t quit. It was like the beginning of a snowball rolling down the hill, causing an avalanche of different side effects.”
Suddenly, Bristol found himself coping with the emotional add-ons of an AD diagnosis: shame, depression, stress, sleeplessness and low self-esteem. “It’s like teenage acne. You have these wounds on your face, and your scalp is a mess. Your body image is completely changed. You’re compounding how you feel about yourself. It really messes with you psychologically and makes life way less fun,” he said.
AD permeated every aspect of the executive’s personal and professional life. The man who had a knack for getting people’s attention in the conference room now dreaded having all eyes on him whenever his skin flared. Business trips grew more cumbersome for Bristol, who often had no idea what sort of exciting, new AD triggers awaited him on his travels. “Not to mention trying to date,” added the single parent.
Eager for a solution, Bristol and his dermatologist worked together to get a new prescription approved by his health insurer and eventually succeeded. He also found a community of other Eczema Warriors when he attended his first Leaders in Eczema Forum in Denver. His experience there helped form his decision to serve on NEA’s Board of Directors.
“I was impressed because, for one, I was relieved to find other people with AD,” Bristol said. “And, for two, I found the information available during the breakout sessions very valuable. I enjoyed meeting and learning from medical professionals who really understand the disease.”
AD in America Fact: Half of adults with AD indicate that AD limits their lifestyle and the degree of limitation is positively correlated to severity.
Photo courtesy of Queen of Adventure
Atopic dermatitis can have a major influence on our life choices, especially when we grow up with the disease. That’s been the case for Karen Trujillo, a 31-year-old registered nurse specializing in dermatology in Huntington Beach, California.
Trujillo, who has lived with AD since she was baby, grew up around nurses. They were her beacons of light during the darkest of times. “I was teased a lot as a kid, but they were so nice to me,” she said. “They made me feel comfortable. I remember telling my mom I want to be a nurse when I grow up because I wanted to be like them. It was good to have a goal that young.”
Trujillo thought she had her allergies, asthma and eczema under control during her college years. But shortly after beginning her nursing career, her atopic dermatitis came back with vengeance. Between the frequent handwashing required for her job and her allergy to latex gloves, eczema flared on her hands and then spread across her whole body. That was when Trujillo knew she should specialize in dermatology and work with other eczema patients.
“Having eczema brings comfort to the patients I serve,” she said. “Feeling alone with this disease is one of the hardest things about having eczema. You long for someone else who understands that sometimes AD can hurt more than just physically—sometimes it can make you feel anxious or depressed. Doctors understand this to a point, but it’s a different story when you can say, ‘I know how you are feeling because I have it too.’”
Unfortunately, having open sores on her hands put Trujillo at a high risk of infection, which was especially dangerous considering the number of contagious diseases being researched and treated at her workplace—the dermatology department at a university hospital. “Luckily, I found a job that was perfect for me,” she said.
Today, Trujillo works from home as a telehealth nurse for patients with AD. “I miss the in-person patient contact, but I don’t miss having eczema on my hands,” she said. “I still get to talk and educate my eczema patients and listen to their stories. I know that I am so lucky to get to do what I love doing. Even though I still suffer with flare-ups, I have a more positive outlook.”
AD in America Fact: Having AD leads to higher likelihood of negative overall health rating and dissatisfaction with life. As severity of AD increases, so do negative impacts on health rating and life satisfaction.
A day doesn’t go by without Brandon Hipps of Avon Park, Florida, being reminded of his atopic dermatitis. The 19-year-old college student has been living with moderate to severe AD, hay fever and food allergies “basically my whole life.” In fact, he’s lucky if he can go an hour without AD popping up in his mind for one reason or another.
Hipps thinks about his AD when he wakes up in the morning with “bloody sheets and scabs everywhere” from scratching himself in his sleep. He thinks about it when he gets in the shower and the water stings his skin. He thinks about it when he slathers on lotions, creams and ointments, causing his clothes to stick to his skin.
Eczema covers Hipps’ whole body, from the top of his head to the bottoms of his feet. It’s on his hands and sometimes even his lips. That means he thinks about AD whenever he walks, talks, writes, eats or shakes someone’s hand. AD rules his life is so many ways that it’s hard for him not to think about the disease and how others will react to it.
“It’s hard for me to go out sometimes to meet new people because it makes me feel bad about myself,” Hipps said. “I’m worried they’ll judge me based on my skin. People can be judgmental and say negative stuff about it. I was teased a lot in high school by people who were my close friends and teammates.”
An avid fisherman and natural athlete, Hipps had to miss entire semesters of high school and college due to his AD. “I played football all four years of high school. When I was starting my first year of college, my worst flare-up hit. I couldn’t even try to find a team to play for, so I ended up going to a local community college. I had to take a semester off this year,” he said.
Hipps is working with his dermatologist to try to get his AD under control. “Right now, I’m on an off label systemic treatment. Two weeks ago, I flared when I went off it, so I’m on a double dose of that now,” he said. “It’s supposed to be the last resort, as far as treatments go, before we try to get me approved for a biologic treatment.”
Anne Marre Bautista
AD in America Fact: AD severity is a major driver for developing comorbidities or related health conditions. When AD symptoms are under control, the comorbidities improve as well.
One of the downsides of having atopic dermatitis is that, even when we’re enjoying a few weeks, months or years of having relatively clear skin, we never know when it’s coming back. And we don’t know what might trigger its return. We’re stuck in a constant state of paranoia because we haven’t quite figured out what’s causing our atopic dermatitis to flare.
What works for some people doesn’t work for everyone. For instance, exposure to sunlight can help some people’s eczema, but it seems to make 30-year-old Anne Marre Bautista’s skin worse. “During my most recent outbreak, the doctor recommended not to go outside because every time I do, and I’m not covered or protected, my skin gets worse,” she said.
Avoiding the sun altogether is easier said than done when you live in sunny Los Angeles. Bautista tries to cover up with long sleeves, but it makes her feel too warm, which causes her skin to itch and flare. Shecan’t seem to win either way, and she’s left feeling defeated.
“I love being outside. I feel happier. I feel more productive in life. It’s really frustrating when you have to limit your activities. It makes you cry because you’re so frustrated,” she said.
Bautista has noticed that when she’s exposed to certain thing like pollen, pet dander, dust mites or certain foods, they not only trigger her skin to flare up in an eczema rash—they also seem set off other inflammatory responses in other parts of her body. “All I know is that whenever I eat sugar, it triggers my eczema and also my arthritis,” she said.
Bautista has palindromic rheumatism, a rare, seasonal form of inflammatory arthritis. Although arthritis is not a known comorbidity of AD, she wonders if they are somehow related. “Whenever I’m stressed, they flare up at the same time. Because they are both autoimmune disorders, I suspect a connection,” she said.
“I don’t even focus on triggers anymore; I just focus on the treatments. Before, when I was younger, my mom went to the other side of the spectrum, meaning if she couldn’t figure out the trigger, she told me to avoid pretty much everything. I had to avoid a lot of foods. I had to avoid going outside because of the sun. She went to the extreme.
“There’s a part of me that did not enjoy my childhood because I had to avoid so many things because of my eczema,” Bautista continued. “Now that I’m adult and still can’t figure out the triggers, I focus on the treatments that work for my skin instead. I’ve been more successful in finding a treatment that works than identifying triggers.”
Bautista followed her doctor’s advice and takes regular bleach baths. She changes her bed sheets every week and sticks to a regimented skincare routine. “Lots and lots of lotion,” she said with a laugh. “I put it on in the morning, at night before I go to bed and as often as possible.”