Three Decades of NCKU EB

Professor Julia Yu-Yun Lee (Dermatology of NCKU)

 When NCKU was first founded in 1988, I was invited by Dr. Kun-Yen Huang, the first superintendent of NCKU, to take the director position in the Dermatology Department. In the early years, the outpatient department had a lot of patients with chronic arsenicosis and numerous patients with various types of opportunistic infection caused by HIV and steroid abuse. Surprisingly, among these patients we found a lot of EB patients, who now have an adorable Chinese nickname Pao-Pao-Long, meaning “Bubble Bobbles.” Back then, I had already heard of DEBRA (Dystrophic Epidermolysis Bullosa Research Association), which was founded in the U.S. and U.K in the 80s, and had been looking forward to the day for Taiwan to have its own EB association. After more than twenty years of anticipation, Debra Taiwan was finally established in June 2009.

EB is a rare hereditary skin disorder with genetic defects that cause the skin to easily blister. When I was a young resident doctor in National Taiwan University Hospital, I only came across one EB case in a conference. However, EB was definitely not rare in Tainan! In my first four years in NCKU (from July 1988 to June 1992), I encountered 29 EB patients from 20 different families. In fact, I met my first two patients within two months since I started my job in NCKU! As EB Diagnosis is based on clinical signs, dermapathology, and electron microscopy, my previous medical training in dermatology, pathology, and electron microscopic diagnosis came in handy. With all the cases at hand, I immediately decided to focus on fibroblast transplantation alongside researches on the morphometry of anchoring fiber through electron microscopy to study the pathogenic mechanism of EB (NSC project, 1991). Later, I published 19 case studies on Dystrophic EB (DEB) due to anterior tibial lesion (Lee et al. Pretibial EB. JAAD 1993). This research recorded 13 EB family histories and their clinical phenotypes in detail, anchoring the abnormal fibroblasts forms and quantities of these patients. Before this study, there had only been one DEB case report in 1990.   

After this research project, we started contacting scholars around the world with outstanding EB research achievements. We began a partnership with scholars including Dr. Uitto, Dr. Shimizu, and Dr. McGrath, sending young dermatologist like Dr. Sheau-Chiou Chao and Dr. Chao-Kai Hsu to their labs to join researches on genetic mutation. I deeply believe in this year’s EB conference (held on Jan. 31, 2021), which was also the first EB conference in Taiwan. In order to prepare the introduction of this EB conference, I especially looked up EB-relevant articles in PubMed. To my surprised, I found 23 EB related articles from Taiwan, among which 11 were published by doctors from our NCKU Dermatology Department!

In recent years, NCKU Dermatology Department has been working closely with Dr. McGrath’s lab in King’s College London, and International Center for Wound Repair and Regeneration led by Dr. Ming-Je Tang. With their supports and the leadership of doctors including Dr. Chao-Kai Hsu, the EB team is thriving in both clinical and research fields. Besides enhancing our diagnoses and treatments, we are also emphasizing on the social support and humanistic care for EB patients and family members. In March 2020, the Special Out-Patient Department for EB and Other Hereditary Skin Diseases was initiated to provide patients a holistic health care that is both friendly and high in medical quality. The link between NCKU and EB patients and families which first started in 1988 has quickly gone through its first 32 years, and we shall continue to walk together in the future. I am very positive about the future development of our NCKU EB Team, and am looking forward to seeing it benefiting our EB patients and families even further.