Life inside a cocoon

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."



“蝴蝶宝贝”是人们对遗传性大疱性表皮松解症(简称EB)患儿的俗称。这是一种罕见的遗传性皮肤疾病,是人类最痛苦的疾病之一,发病率约为十万分之 一,目前国内患者估计为一万人。为唤起社会对这一罕见患病群体的关爱,由患者和亲友自发组建的非盈利互助组织---“蝴蝶宝贝关爱协会”, 于11月3日下午在北京大学第一医院成功举办了第一届病友见面会,并受到各媒体的高度关注。

  由于基因缺陷,EB患者的皮肤和眼睛、口腔、食道等粘膜组织在受到轻微摩擦或没有明显原因的情况下就会发生水疱或血疱,进而导致创伤溃烂,每天 需要换药包扎,痛苦万分,且终生不能痊愈,生活不能自理。很多患儿出生时皮肤缺损,由于皮肤像蝴蝶翅膀一样脆弱,又被称为“蝴蝶宝贝”。目前国际上还没有 治愈EB的方法,但相关的研究比较活跃。由于社会公众缺乏对EB以及该群体的了解,患者在医疗、教育、就业、关怀等方面的基本权益无法得到保障。

  “蝴蝶宝贝关爱协会”成立以来,致力于改善患者的医疗、生活、学习、工作和社会交往质量,成为患者“温馨的家园”,协会的口号是“脆弱的皮肤• 坚韧的爱”。在11月3日下午的病友见面会上,来自全国各地的120多名EB患者及家属、其他罕见病组织的代表齐聚一堂,北京大学第一医院、北京大学医学 部有关专家出席了本次大会。

  这是一次特殊群体的见面会。会上,特邀医疗专家、罕见病机构负责人与广大EB病患及家属深入探讨了有关医疗、教育、罕见病组织未来发展等问题。 本次会议的主办方“蝴蝶宝贝关爱协会”创始人、会长周迎春首先致辞,介绍了EB群体的现状,蝴蝶宝贝关爱协会的工作。随后,协会秘书夏樱栗公布了会员入会 和捐款情况。协会秘书长崔娅姬介绍了大会筹备过程以及她所带领的北京志愿者团队情况。北京大学第一医院皮肤科李若瑜主任、杨勇教授、林志淼博士、丁保玲护 士长分别从EB分类及临床表现、诊断、治疗、多学科护理等方面进行了深入浅出的讲解,提出了建立多学科合作的护理中心(EB-Haus)、与国外机构合 作,进行干细胞治疗的部分研究等未来工作目标。北京大学医学部遗传学系副主任黄昱博士分析了罕见病病友会发展的瓶颈以及解决的方案。患者代表、暖阳热线的 创始人杨婷等患者及家属向与会人员介绍了自己与疾病抗争的感受与经验,引起了强烈的共鸣。

  前来参会的每一个家庭都有着共同的痛苦与无奈。大家纷纷表示,希望通过这次活动能让更多的人了解这个群体、关注这个群体。一位来自山东的女患者 的发言令人难忘:“尽管,我们的皮肤都十分脆弱;尽管,我们时时刻刻要忍受着无尽的痛楚;尽管,我们的家庭还承受着巨大的医疗负担;尽管,我们在教育和就 业方面还面临着很多困难。但是,只要有了社会上更多人的关注和爱心,我们会越来越坚强!病友、专家、志愿者们一起合影



腾讯公益讯 “蝴蝶宝贝”是人们对遗传性大疱性表皮松解症(简称EB)患儿的俗称。这是一种罕见的遗传性皮肤疾病,是人类最痛苦的疾病之一,发病率约为十万分之一,目 前国内患者估计为一万人。为唤起社会对这一罕见患病群体的关爱,由患者和亲友自发组建的非盈利互助组织---“蝴蝶宝贝关爱协会”, 于11月3日下午在北京大学第一医院成功举办了第一届病友见面会,并受到各媒体的高度关注。

由 于基因缺陷,EB患者的皮肤和眼睛、口腔、食道等粘膜组织在受到轻微摩擦或没有明显原因的情况下就会发生水疱或血疱,进而导致创伤溃烂,每天需要换药包 扎,痛苦万分,且终生不能痊愈,生活不能自理。很多患儿出生时皮肤缺损,由于皮肤像蝴蝶翅膀一样脆弱,又被称为“蝴蝶宝贝”。目前国际上还没有治愈EB的 方法,但相关的研究比较活跃。由于社会公众缺乏对EB以及该群体的了解,患者在医疗、教育、就业、关怀等方面的基本权益无法得到保障。

“蝴 蝶宝贝关爱协会”成立以来,致力于改善患者的医疗、生活、学习、工作和社会交往质量,成为患者“温馨的家园”,协会的口号是“脆弱的皮肤·坚韧的爱”。在 11月3日下午的病友见面会上,来自全国各地的120多名EB患者及家属、其他罕见病组织的代表齐聚一堂,北京大学第一医院、北京大学医学部有关专家出席 了本次大会。

这是一次特殊群体的见面会。会上,特邀医疗专家、罕见病机构负责人与广大 EB病患及家属深入探讨了有关医疗、教育、罕见病组织未来发展等问题。本次会议的主办方“蝴蝶宝贝关爱协会”创始人、会长周迎春首先致辞,介绍了EB群体 的现状,蝴蝶宝贝关爱协会的工作。随后,协会秘书夏樱栗公布了会员入会和捐款情况。协会秘书长崔娅姬介绍了大会筹备过程以及她所带领的北京志愿者团队情 况。北京大学第一医院皮肤科李若瑜主任、杨勇教授、林志淼博士、丁保玲护士长分别从EB分类及临床表现、诊断、治疗、多学科护理等方面进行了深入浅出的讲 解,提出了建立多学科合作的护理中心(EB-Haus)、与国外机构合作,进行干细胞治疗的部分研究等未来工作目标。北京大学医学部遗传学系副主任黄昱博 士分析了罕见病病友会发展的瓶颈以及解决的方案。患者代表、暖阳热线的创始人杨婷等患者及家属向与会人员介绍了自己与疾病抗争的感受与经验,引起了强烈的 共鸣。

前来参会的每一个家庭都有着共同的痛苦与无奈。大家纷纷表示,希望通过这次活动 能让更多的人了解这个群体、关注这个群体。一位来自山东的女患者的发言令人难忘:“尽管,我们的皮肤都十分脆弱;尽管,我们时时刻刻要忍受着无尽的痛楚; 尽管,我们的家庭还承受着巨大的医疗负担;尽管,我们在教育和就业方面还面临着很多困难。但是,只要有了社会上更多人的关注和爱心,我们会越来越坚强!

环球时报英文版的翻译: 蝴蝶宝贝的生活

环球时报英文版| Yan Shuang






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