The Pain Will Fly Away – Art Exhibition for Epidermolysis Bullosa
吹一吹、痛痛飛 泡泡龍病友創作展至3月中

            Passersby will be greeted by a hallway of artwork when entering the lobby of NCKU College of Medicine. Opening till mid-March, this exhibition, named The Pain Will Fly Away, is part of a series of charity events by NCKU International Center for Wound Repair and Regeneration (iWRR), which aims to help people with Epidermolysis Bullosa, which causes skin fragility. The art pieces in the exhibition are made by artists who themselves are living with Epidermolysis Bullosa, and the artists express their life experiences through their art creation.

            Huey-Jen Jenny Su, President of NCKU, Yan-Shen Shan, Dean of College of Medicine, and Meng-Ru Shen, Superintendent of NCKU Hospital, all showed their support for the actions helping EB patients. The art exhibition and a musical concert were held in the hope of bringing everyone to spread warmth and love.

            EB, or Epidermolysis Bullosa, is a group of inherited rare blistering disorders, with an incidence of around 1/50,000 worldwide. EB is characterized by skin fragility since birth and abnormal wound healing. Patients tend to have diverse clinical manifestations as well as blistering of varying degrees depending on different clinical subtypes; in addition, there are 21 known EB-related genes, making it difficult to diagnose based on mere clinical pictures and traditional sequencing techniques.

            In the exhibition The Pain Will Fly Away, art pieces by EB patients and their family members are displayed, including paintings, patchworks, and installation arts. Ink painting artist Jo-Chun Hsu saw the fragility in the EB community and thus visited fellow patients and encouraged them to create art with inspiration from their experience, putting their daily lives into their works.

            Even with a simple hole puncher, an artist was able to create art by documenting daily pain through hole punching. The 10-meter art piece impresses viewers with its appearance.

            "It is our honor to learn from those living with EB," said iWRR Director Ming-Jer Tang, "we promise to keep the spirit of sustainability and continue to make improvements for the society with medical technology."

            An interdisciplinary clinic for EB patients was established in NCKU Hospital in March, 2020. This clinic gathers expertise from various fields aiming to provide integrative and tailored care. A team from NCKU iWRR focuses their research energy on EB, utilizing whole exome sequencing and various pathological and molecular technologies, and has successfully completed genetic diagnoses in 70 Taiwanese EB patients. The detailed genetic background paves a way to genetic counseling, prenatal diagnosis, and the arrangement of personalized medicine. Hitherto, there is no cure for EB, and the supportive care such as daily wound dressing, anti-septic agents and antihistamines is still the mainstay. According to the underlying causative mutations, NCKU EB team works with renowned experts worldwide to arrange individualized therapy for Taiwanese EB patients, including biological agents and cell therapy.

            Besides striving to alleviate physical discomforts in EB patients, NCKU EB team also pays attention to providing psychological support for patients. Aside from the current joint art exhibition The Pain Will Fly Away, two charitable music concerts were also held for EB. In addition, the team organized drama camps for not only the patients but also their siblings and parents, guiding them to express their inner feelings and helping the family to manage their emotions and stress properly.

            To make medical services more approachable to these patients, the team also arranged an International EB workshop in January 2021 and exchanged the experiences of EB care among different hospitals and countries. Currently, the team is collaborating with several international medical teams devoting to the investigation of EB pathobiology, finding out therapies with prospects of curing EB. In the end, the shared ultimate goal is to provide the patients and the families with a smiley face, a warming heart, and a better life.

            「吹一吹、痛痛飛,泡泡龍病友聯合創作展」在國立成功大學成杏校區醫學院一樓大廳迴廊展出到3月中。成大校長蘇慧貞、成大醫學院院長沈延盛、成大附設醫院院長沈孟儒等皆到場參與,用行動支持泡泡龍患者,為公益盡一份心力。在生命的傷痕中,藉由音樂得到治癒,集結眾人的力量,將愛擴散出去,嘉惠更多泡泡龍患者。

            「遺傳性表皮分解型水皰症」俗稱泡泡龍症,因為先天基因缺損而導致表皮異常脆弱,嚴重者甚至體無完膚。罕見疾病治療不易,牽動病友整個家庭甚至家族。成功大學團隊與成大醫院秉持人性化醫療精神,推行從個人到全人、從病人到家人的照護模式,展現人性關懷、科技醫療,整合社會資源舉辦聯合創作展與公益音樂會,邀請各界深入體會罕見疾病患者的強韌生命力。

            這次聯合創作展匯集近40位病友與他們父母親的作品,包含:繪畫、拼布、裝置藝術等。水墨畫家也是泡泡龍病友徐若鈞,看見泡泡龍群體的脆弱,逐一拜訪病友,從每一個人與生俱來的想像力出發,鼓勵他們以生命與生活中的點滴作為創作素材。

            一位20歲的嚴重型病友,原認為自己沒有藝術天份,用簡單的打洞機,在紙捲上打洞,以洞的數量和密度,記錄每天在自己身上發生的各種疼痛,最終竟完成長達10公尺震撼視覺的作品。病友協會理事長古寶英女士說:「當病友開始專心畫畫,竟然就暫時忘記身體的搔癢與疼痛。」

            「我無法改變自己的長相,但也許你可以改變看人的想法」。泡泡龍病友齡從6歲到60歲都有,在一處名為「能量集中站」的展覽中,他們寫下從小到大所聽過的各種評論及話語,有最殘酷的,也有最美麗的,一位病友有感而發地說,「其實每個人都一樣,若想看到人們真正的模樣,就要用心去看。」

            「從病人身上學習,是我們的榮幸。」成功大學國際傷口修復與再生中心主任湯銘哲教授說,我們承諾以永續的態度,延續成大豐厚的醫學人文底蘊,深耕精準醫療與智慧醫療,持續造福人群。