A Scientific and Human Perspective on Rare Diseases: Esophageal Atresia Seminar Held

With its "Esophageal Atresia Awareness Seminar," the Üsküdar University Rare Diseases Club brought together the technical details of the medical world with the emotional depth of the patient experience. At the online seminar, where Assoc. Prof. Dr. Ali Gözüküçük's surgical perspective and Umut Berk Şahanlık's inspiring life story were shared, the vital importance of early diagnosis, multidisciplinary follow-up and emotional support for quality of life in this rare disease was emphasized.

Adding another event to its public awareness efforts, the Üsküdar University Rare Diseases Club addressed "Esophageal Atresia" in a comprehensive seminar. At the event, held on the Zoom platform and followed with interest by more than 200 participants, both the medical management of the disease and its effects on individual life were discussed in detail. Combining scientific knowledge with real-life experience, the program offered a broad perspective to the healthcare professionals of the future.

Speaking in the scientific part of the seminar, Pediatric Surgery Specialist Assoc. Prof. Dr. Ali Gözüküçük evaluated esophageal atresia from clinical and surgical perspectives. Assoc. Prof. Dr. Gözüküçük shared up-to-date information with participants on diagnostic processes, modern treatment options and postoperative follow-up protocols. The data presented from the viewpoint of a surgeon specialized in rare diseases once again demonstrated the positive effects of proper intervention and regular monitoring on patients' life expectancy and quality of life.

In one of the most moving parts of the program, Umut Berk Şahanlık, who lives with esophageal atresia, described his own treatment journey. Sincerely sharing the challenges he faced during his illness, his psychosocial coping strategies and his sources of motivation, Şahanlık shed light on the human dimension of the process. This account showed how critical not only technical knowledge but also empathy with the patient and emotional support are in medical education.

In the evaluations made during the event, it was emphasized that esophageal atresia is not so much a dreaded diagnosis as a manageable disease with accurate diagnosis and a multidisciplinary approach. It was pointed out that family education supporting surgical success and public awareness increase the participation in life of individuals living with rare diseases. Having the opportunity to hear both the physician's and the patient's perspective at the same time, participants reinforced their theoretical knowledge with real-life examples.

With this meaningful seminar, the Üsküdar University Rare Diseases Club successfully fulfilled its mission of increasing the visibility of rare conditions. At the end of the event, the expert guests answered questions from participants, completing an interactive learning environment. Club officials stated that they will continue to raise awareness in the field of health through similar awareness projects and to keep the "Science of Goodness" philosophy alive on digital platforms as well.