NCKU Collaborates with Professional Tennis Player Su-Wei Hsieh to Support Patients with Epidermolysis Bullosa through the Love and Scar Charity Concert
成大攜手網球好手謝淑薇 「愛與傷痕公益音樂會」關懷泡泡龍病友
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          Patients with epidermolysis bullosa (EB) have difficult-to-heal wounds and must use gauzes throughout their lives; this results in a substantial financial and psychological burden for patients and their families. National Cheng Kung University (NCKU) has invested in treatment and research for EB over a long period; to draw attention to the disease, the university organized the “Love and Scar Charity Concert” in January 2020. Renowned international tennis player Su-Wei Hsieh is particularly moved by the desire of patients with EB to reduce their gauze usage and engage in the free movement. As an athlete who has always declined endorsement, Hsieh is enthusiastic about recording a charity video and supporting this charity concert for patients with EB. She hopes to encourage the public’s active engagement in this event and actions to express their support and love for patients with EB.

          The Love and Scar Charity Concert was held at the National Taichung Theater and National Kaohsiung Center for the Arts (Weiwuying) on January 3 and January 5, 2020, respectively; the profits were donated to the Taiwan Epidermolysis Bullosa Association. Professor Shi-Wen Chin, winner of the National Award for Arts, was invited to compose a piece for the concert and to conduct the Yinqi Chamber Orchestra to play this piece. Through a multimedia narrative featuring stories and music, NCKU hopes that music enthusiasts can expand and share their love of music, while also helping patients and their families to find hope through music.

          The International Center for Wound Repair and Regeneration of NCKU held a press conference to announce the Love and Scar Charity Concert on December 23. They shared concert details and played the video recorded by Hsieh for patients with EB (https://www.youtube.com/watch?v=GtAS9aMADl4). Patients with EB must use gauze throughout their lives, and Hsieh, who has experienced numerous injuries through her training, encouraged these patients to transform their pain and scars into a form of power in their life.

          Miss Li, a patient with EB, also attended the press conference to raise public awareness about EB. She said that the skin of patients with EB is extremely fragile; a small amount of external friction can cause blisters, which burst and form wet, ulcerated wounds, which occurs repeatedly. Furthermore, these blisters sting and itch and thus causes patients to scratch and ultimately results in bleeding. The blisters may even grow inside patients’ mouths and cause difficulty swallowing, which often leads to malnourishment. Moreover, patients’ mucous membranes are easily damaged, which reduces their immunity. In addition to physical injuries, patients are also subject to staring and bullying through their childhood to adulthood. As Miss Li spoke about her experiences, tears welled up her eyes, and she choked up several times. However, she stressed that patients do not need sympathy or compassion; instead, they need actual care. She hoped that the public would support the Taiwan Epidermolysis Bullosa Association and enable the association to gain the power to assist more patients.

          The Director of the International Center for Wound Repair and Regeneration, Ming-Jer Tang, said that they have received support and assistance from many people since the organization of the concert and compared this to divine intervention. Hsieh’s willingness to help promote the concert was an unexpected surprise and was like a gift from god. Through love, we have more strength to fight against and cure the disease.

          According to Tang, EB has a prevalence of 1 in 50,000, and approximately 100 patients in Taiwan have moderate to severe symptoms. The epidermis (i.e., the skin, mouth, and digestive tract) of a patient is fragile, and blisters and wounds can form after slight external friction. Moreover, patients with severe symptoms are prone to skin cancer in adulthood. Patients must spend many hours changing their dressings and treating wounds every day for their entire lives. The special dressing required results in a considerable financial burden, and patients and their families often turn to folk prescriptions, resulting in a vicious cycle.

          No cure for EB is currently available; the medical research team at NCKU has collaborated with the international community for many years to identify the genes responsible for this disease, improve diagnosis and treatment, and develop personalized treatment and preventions of complications. Moreover, they have started to establish a gene database and genetic consultation services as well as strengthened the relevant care training and social support system. NCKU hopes that society can care for, actively support, and strengthen those combating EB.


          罕見遺傳性皮膚疾病「泡泡龍症」,病患終身無法擺脫傷口與紗布,病患及家屬在經濟及心理負擔上都很大。成大長期投入相關治療與研究,為喚起社會對疾病的關注與認識,2020年1月將舉辦「愛與傷痕公益音樂會」。國際網球好手謝淑薇,長年在球場自由馳騁,對泡泡龍病友渴望擺脫紗布、自由活動的心願格外有感,向來婉拒代言的她,熱心拍攝公益影片、支持公益音樂會,期待各界踴躍發揮愛心,以行動支持一起為泡泡龍病友綻放出美麗。

          「愛與傷痕公益音樂會」2020年1月3日、5日,分別在台中國家歌劇院與高雄衛武營音樂廳舉行,所得全數捐予「臺灣泡泡龍病友協會」。音樂會邀得國家文藝獎得主金希文教授製作曲目並指揮「音契室內管弦樂團」演出。透過故事與音樂的多媒體敘事,讓愛樂者把對音樂的喜好擴散為愛的分享,也讓病友與家屬在音樂中擁有希望。

          耶誕節已然到來,成大國際傷口修復與再生中心12月23日舉辦「愛與傷痕公益音樂會」記者會,分享舉辦音樂會的初衷並播放謝淑薇為泡泡龍病友拍攝的影片(https://www.youtube.com/watch?v=GtAS9aMADl4)。泡泡龍終身為紗布為伍,謝淑薇長年練球大小傷不斷,她鼓勵病友將病痛與不美麗的傷痕,轉化成生命另一層力量。

          希望社會大眾認識泡泡龍症,病友李小姐特地出席記者會。她表示,泡泡龍症病人的皮膚很脆弱,稍有外力摩擦就形成水疱,泡泡破了變成溼爛傷口,情況反覆發生,加上泡泡會刺痛、會癢,忍不住想抓,往往皮破血流。泡泡龍症患者甚至連口腔也會長泡,吞食困難,因此往往營養不良,加上體內黏膜也容易受傷,影響抵抗力。有形的傷之外,還有他人異樣眼光或言語霸凌,小時候到大從來沒少過。說到傷心處,李小姐眼角泛淚,幾度難過得無法言語。但她強調,病友不需要同情與憐憫,需要的是實質關懷,期待各界支持泡泡龍病友協會,讓瘦弱的病友協會多長些肉,幫助更多的病患。

          國際傷口修復與再生中心主任湯銘哲表示,籌辦音樂會以來,得到許多人的支持與協助,彷彿冥冥中得到神助。更意想不到的是,網球好手謝淑薇願意幫忙宣傳,真是天上掉下來的禮物。有了愛,對抗與治療疾病會更有力量。

          湯銘哲表示,俗稱泡泡龍症的「遺傳性表皮鬆解型水泡症」,罹病率為5萬分之1,全台中重度病友約100位,可說是弱勢中的弱勢。患者全身表皮(皮膚、口腔、消化道)異常脆弱,稍有外力摩擦就會形成水疱與傷口,嚴重者成年後也容易形成皮膚癌化。患者終其一生,每天要花費數小時換藥與傷口處理。價錢昂貴的特殊敷料是沈重的經濟負擔,病患與家屬往往因不堪折磨轉向偏方藥,造成惡性循環。

          目前的醫學對泡泡龍症尚無根治之道,成大醫學研究團隊多年來與國際合作研究致病基因提昇診斷治療,以期採用更為個人化的治療,預防或減輕併發症。也著手建立基因資料庫與遺傳諮詢,以提供防治基礎。同時也強化照護培訓與社會支持系統。希望社會關心、積極支持這一群與疾病對抗的鬥士,為他們帶來更多力量。