Life inside a cocoon

By Yan Shuang Source:Global Times Published: 2012-11-6 19:55:06


Zhou Mi is one of around 10,000 people in China battling the skin disease Epidermolysis Bullosa. Young sufferers are known as
Zhou Mi is one of around 10,000 people in China battling the skin disease Epidermolysis Bullosa. Young sufferers are known as "butterfly children" due to the fragility of their skin. Photo: Courtesy of Zhou Yingchun

Zhou Yingchun was not allowed to hold his baby daughter until one month after she was born in 2003. He was panic-stricken when the doctor told him she was born with a rare skin disease. The slightest scratch could lead to blisters and severe abrasions, the then 29-year-old father was told.

"She had extremely white skin that was patchy on her legs," Zhou recalled upon first seeing his daughter, Zhou Mi. Diagnosed with Epidermolysis Bullosa (EB), Zhou Mi suffers a rare and potentially fatal genetic disorder that affects one in every 50,000 people worldwide. Young EB patients are dubbed "butterfly children" because their skin is as fragile as the insect's wings.

Though they initially struggled to come to grips with the disease, Zhou Yingchun and his wife have learned to manage it with their daughter, who is now aged 9.

Showing support in numbers

Some 100 EB patients and their families nationwide gathered in Beijing last weekend for a group meeting organized by the China branch of the Dystrophic Epidermolysis Bullosa Research Association (DEBRA). It was the first time many of them, who became friends online, had the chance to talk face to face.

As medical experts and DEBRA's volunteers met with patients' families, some of the "butterfly children" mingled in the meeting room with their new friends, and collected smiley face badges from the group's 20 volunteers.

"EB, unlike other diseases such as cancer, remains unfamiliar to many in China since the rate is not as high [as it is in other countries]. There are no special government-funded medical institutes researching the disease," said Cui Yaji, a volunteer with DEBRA China, which was co-founded by Zhou Yingchun and other relatives of EB patients earlier this year.

Cui, 49, a researcher with a science academy, is the only DEBRA volunteer who does not have an EB patient in her family. She was initially secretive because she didn't want them to think she was motivated to help "out of pity."

"I approached the EB patients under the guise of being a patient's family member," Cui said, adding the disease can also take a devastating emotional, as well as physical, toll.

Many patients find it difficult to start a romantic relationship and almost impossible to get a job. It took months for Cui to earn the trust of EB patients, she said, adding that there are around 10,000 people in China living with the disease.

"Zhou Mi is quiet in front of strangers and rarely talks about her illness. Luckily, she has a younger sister and some friends at school helping her out," her father said, explaining that he believes it's better for his daughter to attend a public school to help her personality develop than be home schooled.

Beyond a life of blisters

What many children take for granted, such as a walk in the park or frolicking in the school playground, can be extremely dangerous for Zhou Mi. In 2005, she lost the skin off the top of a finger when her mother took her for a walk and tried to pull her up after she accidentally fell. Every time her skin breaks, it becomes weaker and more difficult to heal.

On another occasion, she suffered serious injuries to her esophagus.

Several times her father had to make her swallow the mucosa - a key layer of the esophagus - after she had coughed it up.

"I originally felt sorry for myself for being condemned to such a fate, but I've since grown to understand that each child, healthy or not, is a gift to their parents," said Zhou Yingchun, explaining why he founded DEBRA's Chinese-language website in 2006.

Severe cases of EB are painful for sufferers and can result in disfigurement and premature death. Those with mild forms of the disease typically suffer blisters and infections to the eyes, mouth, throat and some internal organs.

Li Ruoyu, a dermatologist with Peking University First Hospital, told Metro Beijing that a group of doctors with the hospital started researching EB in 1996.

Genetic treatment, protein replacement therapy and bone marrow transplantation are the main forms of treatment for EB-related injuries.

Treatment for blisters and abrasions mainly involves bandaging, according to Lin Zhimiao, another doctor at Peking University First Hospital.

The most commonly affected body parts are the limbs, Li said, adding that usually patients have to undergo surgery on their hands and feet to correct webbing between the fingers and toes, which can form due to inadequate exercise during healing.

"Some [EB sufferers] die within a few days of birth, while others can live 20 to 40 years. It's a disease that affects the whole family, as it can take hours for family members to bandage the wounds of a patient," she said.

The best way to lower the incidence of EB is for prospective parents to undergo genetic examinations when they plan to have children, Li said. But even this is not a guaranteed preventative measure.

EB patients need to avoid friction, pressure and heat, and should be on a high-protein, fiber-rich diet, she suggested.

'Butterfly child' soars high

When life gets tough, some patients find strength to continue battling their disease through their passion. Yang Ting, 35, is a role model for EB patients across the country.

Although she dropped out of school because of her disease when she was 15, Yang fell in love with writing while she was in hospital. She's now writing her autobiography and wants to inspire more people with her story.

She even has certification as a psychiatrist. In 2005, Yang opened the "Sunshine Hotline" to provide free counseling to people seeking help with their problems.

"Everyday I receive calls from people asking me for advice on problems they have in their lives. People seek advice on issues including medical treatment, coping with pressure and even relationships," Yang told Metro Beijing.

"My skin bleeds sometimes when I sit in bed taking phone calls for too long. But I'm happy there are people who trust me and seek guidance from me when they're frustrated, just as I once was."

Posted in: Metro Beijing

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