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.