The NEA research team has published its latest paper on the out-of-pocket (OOP) costs of atopic dermatitis (AD) in the U.S. — this time examining OOP costs among caregivers of children with AD compared to adults.
Published On: Aug 7, 2017
Last Updated On: Jul 15, 2021
The following is an excerpt from the book, Living with Itch: A Patient’s Guide, by Gil Yosipovitch, M.D., and Shawn G. Kwatra, M.D., in which Kaspar Mossman describes his lifelong battle with eczema.
I’ve suffered from chronic itch all my life: forty years and counting. I have eczema. A dermatologist told me I was the worst case she’d ever seen. Genetics and environment may have combined to intensify my condition. My paternal grandfather, a legendary curmudgeon, had eczema, and it afflicts my sister, my daughter, and a cousin. I spent my first decade on the Canadian prairie, with its extremely dry and hot summers and bitter winters. And my father smoked cigarettes in the house until I was seven years old.
Whatever the causes, I’ve spent countless nights in the grip of itch, tearing at my skin to wake in the morning with crusty gashes on my hands, face, and elsewhere. As I type these words, under the stress of composing prose, I reach under my desk to scratch the back of my knees. To live with eczema is to ﬁght a war for control of your own body—with the goal of enjoying life, even temporarily, as people with normal skin do.
Adult eczema, like many chronic diseases, resembles a conﬂict in one of the world’s many trouble zones. Cyprus, the Balkans, east Africa, Palestine: a bomb explodes, crowds riot, soldiers shoot, things calm down, diplomats talk, but nothing ever gets resolved.
Eczema ﬂares are one aspect of the conﬂict. Sometimes there’s an obvious cause: I am terribly allergic to cats, but I enter the house of a friend who owns one. Or I eat something that contains cayenne pepper, a vicious trigger. Sometimes there is no apparent reason. Still, after a few days or weeks, my skin clears. The episode is a battle of sorts. I would like to think that in some cases I win, when I exert control. I identify the trigger and prevent myself from exposure: stay away from cats; eat a bland diet. I employ my arsenal of topical steroids. I smear on thick moisturizing cream. I practice yoga to relax.
Beyond ﬂares, the broader conﬂict with eczema takes place on many fronts. Most of the time, nobody knows that you are ﬁghting but you. Nobody cares but you. But when you win, the triumph is all yours.
Most people associate eczema with childhood. And children are not expected to control themselves, so nobody blames them when they scratch. An adult who scratches, by contrast, seems immature. Not many people understand how itchy someone with eczema can feel and how it can be impossible to restrain yourself from scratching. Even my own father, when I was twenty-two, told me that adults don’t scratch and it was time to grow up. (And his father had eczema!)
Even when you’re not scratching, the scars of your previous bouts with eczema disﬁgure your hands and face. As you ride the subway, order in a café, or make a PowerPoint presentation at work, eyes are judging you.
Unfortunately it’s not easy to stop scratching. Most of the time it’s not even an option. Some of the worst episodes of scratching come at night, when I am asleep, and I literally have no control. During the day, I sometimes experience intense episodes of itch brought on by stress or other triggers, which only a life-or-death threat can override.
However, you can cure yourself of a certain kind of scratching that most people would class as a bad habit. I indulge in this type of scratching to relieve nervous energy or when I’m bored. I discovered on the Internet several varieties of psychological training that you can do by yourself or with a professional to quit. I tried one, “habit reversal,” after learning about it from Christopher Bridgett, a psychiatrist in London.
In habit reversal, ﬁrst you make yourself aware of how much you scratch. Then you intercept each impulse, and clench your hands instead, or perhaps dig your nails into your palms to create a bit of pain to mask the itch. Over time, you feel less inclination to scratch. Habit reversal worked for me. Maybe my brain now associates the sensation of itch with the punishment of pain instead of the reward of scratching. Your training can lapse, so you must keep it up.
My eczema has never been a problem for my romantic partners, despite my teenage fears. (It certainly doesn’t make you any more conﬁdent with the opposite sex, though.) A former girlfriend told me, during an angst-ﬁlled breakup, that “it was never about your skin.” Apparently I have other ﬂaws!
I took the aftermath of that breakup as an opportunity to tackle a long-postponed challenge: to search, with as much rigor as possible, for the foods that I was convinced were triggers for my eczema. Since I lived and grocery shopped alone, I was able to cut out whole food groups for weeks at a time and see what made a difference. The results surprised me.
I had read that the major food allergens are found in dairy, soy, wheat, nuts, and ﬁsh; also, I had identiﬁed other suspects such as tomatoes and citrus. I quit drinking coffee. I threw out the contents of my spice cabinet and, for a draconian half-year, stopped eating at restaurants because I couldn’t be sure what the cooks were putting in the food.
After two weeks of a diet of little more than oatmeal, rice, lamb, and a small list of vegetables and fruit, I was amazed to ﬁnd that my skin had almost completely cleared up. I could actually see blue veins on the back of my hands, which had previously burned red with eczema. I reveled in my new freedom to take my shirt off while hiking on hot days.
Then I began adding foods back in, two weeks at a time. Wheat. Soy. Dairy. Tomatoes. Oranges. Not a single whole food turned the eczema back on again.
What I did notice, though, was that alcohol — particularly spirits and certain wines — caused problems, as did hot spices. My conclusion was that alcohol and spices make your skin hot and ﬂushed, and somehow the increased blood ﬂow makes you itchy, even hours afterward.
The rice vinegar in sushi was also deadly. A few years later I thought I would explore ﬁne cheeses and, after one of the most unbearable nights of my life, realized that aged cheese contained a mystery essence of itch. That essence, I learned from Internet searches, was histamine, a component of many aged and fermented foods such as pickles. Red wines, especially burgundies, contain a lot of histamine, which is probably why they make me feel itchy.
I also had a skin prick allergy test done, which revealed that I was likely allergic to cats, which I was well aware of; rye grass pollen, which made clear that my environment might be a factor; and egg white, which explained why I itched like a ﬂea-bitten dog after drinking eggnog every Christmas. The allergy test wasn’t particularly helpful by itself, but it contributed to a growing sense that I was understanding my disease and gaining a degree of control over it.
If you have eczema, you learn to live with the threat of infection. My own worst scare came when I was sixteen and had found that I could quell my itchy scalp by pulling out small clumps of hair. I thought this was a ﬁne discovery. But after a few days, little ﬂuid-ﬁlled blisters started creeping over my torso. They spread to my face — and everywhere. I looked like a medieval plague victim.
We were in Germany at the time (my father, a professor, was on sabbatical near Frankfurt) and my mother took me to the dermatologist. Language was not much of a barrier. He prescribed two strengths of cream which he said were “very powerful.” Fortunately, the medication cleared up the rash, which I realized later must have been eczema herpeticum.
Several times since then I have had widespread Staphylococcus aureus infections. The ﬁrst time I had one, it was because I had just started using a super-strong steroid ointment and had applied it over too much of my skin at once. Amoxicillin cleared that outbreak up, but I kept the vial of antibiotic capsules and proceeded to self-medicate with them, one or two at a time, every few weeks or so. That was colossally stupid, because the next staph infection I had didn’t respond to amoxicillin. I had created a resistant strain. (Dicloxacillin killed that one off.)
What I’ve learned about infections and eczema is this: be aware of the ﬁrst signs of infection, and respect your antibiotics. Complete the course of medication properly, and throw away any pills you have left over. If you monkey with your meds, you only create trouble.
National Eczema Association extends a special thank you to Gil Yosipovitch, M.D., Shawn G. Kwatra, M.D., Kaspar, Mossman, and The Johns Hopkins University Press for allowing this excerpt from the book Living with Itch: A Patient’s Guide to appear here.
Read: Why do we itch?