Atopy’s curse: itch all day, scratch all night
“He can’t sleep and there’s nothing I can do. It’s painful to watch him suffer,” Ms. Kim said.
For Ms. Kim, it has been six years of sleepless nights tending her son, who suffers from a modern, incurable disease known as atopy.
Atopy causes dry skin, but its symptoms can include eczema, allergic rhinitis and asthma, but its worst symptom is its intolerable itchiness. The cause is unknown, but it is often related to stress and has genetic and environmental factors (pollution is one of them).
According to Rha Yeong-ho, a pediatrician at Kyung Hee Medical Center, 40 percent of the infants with atopy will see its effects within 12 months, and half by the age of four. The Health Insurance Review Agency said one of five children under the age of four suffers from atopy, and the number of atopy patients increased 7 percent to 1.2 million last year.
What makes atopy so horrible is that it cannot be cured. Ji-hu’s parents talked with doctors from the time he was an infant; he took drugs, but some had serious side effects, and his condition worsened. Medicine is of limited use for atopy patients, because after a few years even a high dosage has little effect. Many of them came to distrust medical institutions and turned to nonofficial remedies such as herbs, aromas, green tea baths and health foods, which sometimes aggravated their conditions.
Soon after his birth, red rashes appeared on Ji-hu’s face. A pediatrician subscribed a steroid ointment, the most common atopy remedy used despite its many side effects. The rashes disappeared briefly, but by the time he was 100 days old, they had spread over his entire body. Since then, the symptoms have flared and ebbed, but never disappeared.
Food and environmental factors ― whether meat, milk, cooking oil, dusts, mites, chlorine and formaldehyde ― cause reactions in atopy patients, but each factor affects each individual differently.
After years of trial and error, Ji-hu learned to avoid eating things that could cause problems. “When people give him things to eat, he tells them he can’t eat them,” Ms. Kim said.
In Ji-hu’s case, nearly all meat (except duck and dog) and most cooking oil (except grape seed oil) causes a reaction, and he can eat only a limited selection of fruit and vegetables.
The social impact of his condition, however, is perhaps worse than the symptoms themselves. Since he can’t eat at restaurants or in his kindergarten cafeteria, he has few chances to bond with his classmates. Ji-hu is also very sensitive to chlorine in water, and cannot wash his face or hands with water unless it has been purified, although now that his condition has improved slightly, he feels comfortable washing his hands with regular tap water.
He sleeps on 100-percent cotton linen, which must be thoroughly washed and dried so that it is free of mites and residual chlorine.
All these limitations take a toll on his mother, who must prepare all of his meals and do all of his laundry. The family does not take holiday trips or go to swimming pools.
As Ji-hu gets older, the areas of his body affected by atopy will change. Young children often have rashes on their outer arms, face and torso, but around the time they enter elementary school, the outbreaks occur in their armpits, behind their knees and on the back of their neck, hands and feet ― places where sweat collects.
Even sweat can be deadly. One atopy sufferer, Jeon Myoung-jin, a 31-year-old programmer, suffered from recurring bouts mainly on the back of his neck, but it was when he was in the army that his condition became serious. The rigorous training made him sweat all day and left little time to shower. The rashes spread across his entire body and his skin become as tough as an elephant’s.
To avoid Mr. Jeon’s fate, Ji-hu stays home all day in the summer, never turning off the air conditioner. Whenever her son needs to go to the hospital, Ms. Kim keeps the car air conditioner on so that her son won’t sweat when he gets in the car.
Exercise is out of the question.
“Some parents have requested a copy of the medical diagnosis so they can show it to their children’s physical education teachers,” Dr. Rha said.
The incessant itchiness experienced by atopy patients, however, justifies the caution. Sufferers describe it as unbearable. They cannot resist scratching, and each time they do, the rash spreads. Some scratch themselves until they bleed. Then their skin hardens, becomes scaly, and starts to peel.
“You can’t compare the itchiness to a mosquito bite,” Mr. Jeon said. “It’s much more serious. You can feel your lungs itch inside your body.”
Everyday household substances can aggravate the itchiness; tiny amounts of formaldehype in paint and glue used in furniture can affect sufferers in not-so-tiny ways.
Ji-hu learned this the hard way when he visited his grandparents’ new apartment. His family spent the night there; the next morning his neck and upper chest were stained with dried blood. The rooms have been ventilated to remove lingering chemicals, but the paint and glue on the walls and in the furniture still caused a reaction ― Ji-hu had scratched himself in his sleep.
Despite the danger of sweating, most atopy sufferers prefer days over nights. Falling asleep can be nearly impossible, and even if they do manage, they still risk scratching themselves in their sleep.
“I used to tie the end of my sleeves so I wouldn’t scratch myself (in my sleep),” said Kim Su-jeong, a 34-year-old designer. “But in the mornings I would find that I had taken my shirt off while I was unconscious. It was scary.”
Parents of children with atopy often grow frustrated with the inability of doctors to cure their child, and move from clinic to clinic, trying both western and oriental medicine. Some resort to organic diets and home remedies that actually endanger their child; one mother reportedly fed her baby only vegetables until the child became malnourished.
Ji-hu’s mother tried all kinds of home remedies, but she said nothing worked save for aroma therapy. “Most patients distrust medical institutions and eventually turn to home remedies,” Ms. Kim said.
According to a survey by the Kyung Hee Medical Center of 170 atopy patients and their parents (not all of whom were at the center itself), 107 said they had stopped going to their hospital or clinic because they no longer believed it helped them.
“Doctors say they are experts,” Ms. Kim said, “But you have to experiment on your own children.” Ms. Kim added that the most doctors can or will do is to give them prescriptions for steroids. “Parents become doctors.”
Kim Su-jeong stopped consulting doctors three years ago. She developed rashes when she was 10 year old and since then has used only steroids to treat her condition. Four years ago, her body had adjusted to the medicine so completely that the effect of the steroid tablets lasted only one day. She found herself applying steroid cream 30 to 40 times a day.
Three years ago, she decided to stop taking medicine. Her symptoms went into overdrive: her skin itches terribly, crusted and peeled, and she had to sweep the layers of dead skin from her apartment furniture and floor several times a day.
Like many atopy patients, Ms. Kim has tried all kinds of home remedies. She was a meat lover, but she stopped eating meat (except for fish) and started eating organic foods. She heard that jogging alleviated the effects of atopy, so she took that up as well. She bought traditional medicine, boiled it and rubbed it on her skin.
When she went back to her doctor eight months later, he told her that giving up on the medicine was a stupid thing to do. “I think it was a dangerous thing to do,” Ms. Kim added.
Stupid and dangerous, maybe, but it had its advantages. Her immune system recovered and even small doses of the medicine once again had an effect. Her headaches and premenstrual aches were gone as well. She said her semi-vegetarian diet also seemed to be effective.
Ms. Kim now takes the drugs, but at one-third the recommended dosage. She endures the itchiness and discomfort rather than trying to rely on steroids. She has also reduced the number of drugs she takes, and mainly uses the eczema drug Advantan.
Four years ago, Ji-hu’s parents decided to move to the Seongnam district of Bundang from their old home in Jamsil, southeastern Seoul. They believed that environmental factors such as pollution might be aggravating Ji-hu’s condition. Their new home, next to a creek and a mountain, was definitely more rural.
“I used to have to wrap him up with clothes when we lived in Jamsil, but he got all red,” Ms. Kim said. “Now at least we can take a walk.”
Many patients believe that their symptoms are related to their environment, and they often move out of the city to places with better air quality.
Ji-hu and his mother tried living in Gangwon province and then on Jeju Island. They even spent two months in Australia to see whether his condition would improve. The continent’s notoriously strong sunlight, however, did not help. At best, the two could go outside for walks.
Then in March came the breakthrough: Ji-hu went to live in Calgary, Canada, for three months. The effect was remarkable. His symptoms disappeared and he could eat food he would never have touched in Korea. The dry and cold weather and fresh air changed him radically.
“When we returned to Korea, he was almost normal,” Ms. Kim said. Most of all, she added, he slept well. The lesson was that air quality alone could not help; Ji-hu needed a change in climate.
To test her theory, Ms. Kim brought back with her the wheat cookies Ji-hu ate in Canada. When he ate them in Korea, however, he had an allergic reaction.
Ji-hu is now attending an English-language kindergarten in Bundang. His mother said the family was planning to immigrate to Canada and live in Winnipeg, Manitoba.
In the meantime, his mother is still making midnight trips to his room to calm him down, keeping the air purifier running non-stop and trying to remember the year-and-a-half period when Ji-hu’s symptoms lay dormant.
“I used to have goals for him, his education and his future,” Ms. Kim said. “I don’t have those any more. I just want him to be happy.”
by Limb Jae-un