[USR Series Report] Stepping Out of the Medical Ivory Tower: NCKU Weaves a Holistic Care Network for "Bubble Dragon" Patients-國立成功大學永續發展SDGs

"My biggest wish is to be able to earn money and support myself." This was said by a Bubble Dragon patient on the eve of Christmas 2024, during the opening of the co-creation art exhibition for Bubble Dragon patients, hosted by the National Cheng Kung University (NCKU) International Center for Wound Repair and Regeneration. This seemingly simple wish speaks to the deepest desire of those with rare diseases – not just to be cared for, but to live out their own value.


"Bubble Dragon" (Epidermolysis Bullosa) is a rare genetic skin disorder, with an incidence of approximately 1 in 50,000. Patients' skin is extremely fragile, and even slight friction can cause blisters to form, leading to open wounds. Behind this seemingly romantic disease name lies a life of lifelong struggle, constantly accompanied by pain and suffering.


Since 2017, NCKU has been developing genetic diagnostic technology and has now gathered genetic data from over 130 patients and their families. In 2020, NCKU Hospital established the only "Bubble Dragon and Rare Skin Disease Special Clinic" in the country, serving more than 45 patients each month. However, as Professor Ming-Jer Tang, a distinguished professor at the NCKU International Center for Wound Repair and Regeneration, noted, "We have gradually realized that medical care alone is not enough. These patients need holistic care, including psychological support, social participation, and even opportunities for self-realization."


Currently, there are 150 reported Bubble Dragon patients in Taiwan according to the Ministry of Health and Welfare, but based on prevalence rates, the actual number may be closer to 500. Although health insurance provides medical coverage, patients with more severe conditions often face treatment and care costs that are not covered by insurance, which can amount to up to 400,000 TWD annually. In addition, the disease brings challenges not only in healthcare but also in education and employment, which often become burdens for the entire family.


To address this, the NCKU team proposed the "From Clinic to Community: Life Hospitality for the Bubble Dragon Community" university social responsibility practice plan. The goal is to create a comprehensive support network for Bubble Dragon patients over 3 years (2025-2027) through 3 innovative strategies.


"The most unique aspect of this project is that we are attempting to break away from traditional charitable models," explained Assistant Professor Yi-Chun Lee, co-host of the project and a faculty member of NCKU's Department of Humanities and Social Medicine. "We are trying to connect with social enterprises to transform the patients' creations into commercial value. For example, we are developing a project to turn the writings of patients into unique fonts, which can later be commercialized through licensing. This is not just about charitable donations; it's about allowing the patients' talents to be recognized, enabling them to earn income through their own creations, and establishing a sustainable business model."


Another key milestone of the project is that NCKU has begun establishing the first "Bubble Dragon Home" in Asia. This space will not only serve as a respite station for patients but will also become a medical education base and a creative workshop. Additionally, over the next 3 years, NCKU plans to create a "Rare Disease Specialization Micro-Course." Just after the winter break, the NCKU Medical School, in collaboration with USR partner Taipei City University’s Department of Psychology and Counseling, co-hosted a "Medical Humanities Clinical and Psychological Healing" seed training course. This program connects students from the field of psychological counseling to the Bubble Dragon community through community-based internships. The goal of talent development is to cultivate interdisciplinary professionals who possess both medical expertise and a sense of humanistic care, and are willing to accompany those suffering through their journey.


Surveys show that more than two-thirds of Bubble Dragon patients in Taiwan live in the central and southern regions. "This data tells us that NCKU has an undeniable responsibility," said Professor Ming-Jer Tang. "Our goal is to use NCKU as the foundation to build a local service network that can extend to Bubble Dragon patients across the country."


These efforts have already begun to make a difference. Guo-Ming Wu, the chairman of the Taiwan Bubble Dragon Patient Association, expressed emotionally, "In the past, parents had to figure things out on their own, like moving forward in the dark. Now, with the help of the NCKU team, we finally see the light. They not only teach us how to change dressings and care for our children, but more importantly, they have given us hope." At the end of 2024, the NCKU Bubble Dragon team was further honored with the National Healthcare Quality Award, receiving the Gold Award in the Outstanding Medical Category.


"Just changing dressings every day takes 2 to 3 hours," explained Professor Chao-Kai Hsu from the NCKU Department of Dermatology. "Many patients suffer from finger adhesions and joint contractures due to long-term wounds. Some can only eat soft foods, and others may have to keep their eyes closed for two weeks due to eye ulcers. Speaking too much can cause blood blisters to form in the throat." The complications of the disease can even pose a threat to the patients' lives.


"Every life deserves to be treated with hospitality," added Assistant Professor Yi-Chun Lee. "We hope that through industry connections and innovative services, Bubble Dragon patients will not just be the recipients of care, but will also regain their place as active members of society. This is not just about providing medical services; it is about realizing the value of life."


With the efforts of the NCKU team, a holistic care network encompassing medical care, talent development, association empowerment, and value circulation is being formed. This innovative model may set a new benchmark for the care of other rare diseases. Every life deserves to be treated with hospitality and to recover and shine with its own unique brilliance.