Miho Ushiyama
Assistant Professor, Waseda Institute for Advanced Study
“The pain was so intense that I could hardly breathe. I didn’t know what I was living for. Every part of my body hurt and went numb…I scratched myself for 12 hours and then felt terrible pain for 12 hours. This happened over and over again. I had no time to sleep. It was quite an ordeal” (Asami, 28-year-old woman)
This is what Asami (fictitious name) told me, recalling the time when her symptoms of atopic dermatitis were the most severe. Many people have an image of atopic dermatitis as an itchy skin disease that occurs in children, but this account from Asami goes far beyond our general recognition of atopic dermatitis.
As seen from her example, atopic dermatitis is not only found in children. Adults may also have this disease, and some of them experience symptoms that become severe to the point that they are forced to take a leave of absence from school or quit their job. I have interviewed such adult patients with atopic dermatitis since 2006, and I also interviewed patients with atopic dermatitis in Britain from 2008 to 2010. As a result, I have interviewed 30 Japanese and 14 British--a total of 44 patients.
Difference in the recognition of atopic dermatitis between Japan and Britain
When I interviewed Japanese and British patients, the first thing I noticed was that atopic dermatitis is very well known in Japan. While most Japanese people are able to imagine what kind of disease atopic dermatitis is, most British people are not familiar with the terms atopic dermatitis or eczema. This is not because the number of patients with atopic dermatitis is large in Japan and small in Britain. Actually, the prevalence of atopic dermatitis in children is similar (10 to 15%) in both countries.
Why, then, is atopic dermatitis well known in Japan?
Drugs called topical steroids
A major clue to answer this question is a class of drugs called topical steroids, which is used as the main pillar of atopic dermatitis therapy. Topical steroids are supplied in the form of ointments or creams containing steroid hormones, which is one type of the adrenocortical hormones, to be applied onto the skin. Topical steroids relieve inflammation rapidly, but they are unable to cure the disease radically. In addition, their long-term use may make the skin thinner or make patients more susceptible to infection. Furthermore, topical steroids lose their effectiveness over time. Some patients experience severe worsening of symptoms, known as a rebound, when they stop using steroids. For these reasons, many patients have some hesitation about the use of topical steroids.
However, it was only recently that patients started having such hesitation. In Japan, although the use of topical steroids began in 1953, atopic dermatitis had been a rare, little-known disease until the 1990s and only a limited number of people such as dermatologists knew about the adverse effects of steroids.
The situation changed dramatically in the 1990s. At that time, there was a rumor circulating that long-term use of topical steroids may cause adverse effects such as osteoporosis or cataracts, immediately attracting people’s attention to topical steroids. Through the mass media, many patients knew that the drugs they had used were called steroids and that steroids had adverse effects.
Expansion of the atopy market
Around that time, some patients stopped using steroids. All kinds of atopy products including soap, bedding, water, and food that targeted such patients were sold in stores and by mail-order. Dermatologist Kazuhiko Takehara sarcastically refers to it as the “atopy business,” and, as this term implies, the commercial atopy market expanded as more patients refused the use of steroids.
If patients suddenly stop using topical steroids, symptoms are often exacerbated. Symptoms usually subside gradually, however, after patients get through this worsening. Asami’s account mentioned at the outset depicted her rebound after she stopped using steroids (her symptoms had largely subsided when I interviewed her).
Situation in Britain
Now l will return to the question of why atopic dermatitis has become so well known in Japan. I believe that it is due to the expansion of the atopy market–triggered by the controversy over steroids–has led to the frequent use of the term atopic dermatitis.
Has any dispute like the one in Japan ever occurred in Britain, where people seldom talk about atopic dermatitis? In fact, the tendency of patients to refuse the use of steroids is also common in Britain. Unlike the atopy business that emerged in Japan, however, such patient sentiment has never been linked to the market. One of the reasons for this is that Britain has strict regulations on advertising and extravagant advertisement (claiming, for example, that the product can cure the disease) is prohibited. Therefore, there is a limited chance for dubious therapy business to hit the market, except for some acknowledged alternative medicine such as acupuncture, moxibustion and homeopathy.
The boom of the atopy business in Japan has already passed. Now is the time to think about how to deal with atopic dermatitis, without being affected by the market.
ABOUT THE AUTHOR
Miho Ushiyama
Assistant Professor, Waseda Institute for Advanced Study
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Assistant Professor, Waseda Institute for Advanced Study. Ph.D. (Literature). She completed the master’s course in the Faculty of Letters, Arts and Sciences at Waseda University and worked as a research associate, Faculty of Humanities, School of Letters, Arts and Sciences I, Waseda University. She went to Britain in 2009 and completed the master’s course in medical anthropology at University College London. She received a Ph.D. degree (Literature) on Faculty of Letters, Arts and Sciences at Waseda University in 2012. She specializes in medical and cultural anthropology. She wrote Ethnography of Atopic Dermatitis: knowledge of Japanese and British patients [Atopi sei hifuen no ethnography: nihon to igirisu ni okeru kanja no chi wo megutte] (2012, doctoral thesis).
