Myasthenia Gravis Classmates Move Forward with Strength: Holistic and Perennial Care for Myasthenic Patients

Abstract

<p>新光醫院有感於全方位醫療新時代來臨，神經科積極研究治療方法，為提升醫療品質及促進醫病溝通，結合病人與家屬共同參與，在1992年創院即成立「肌無力症中心」，在院長及副院長領導下，以「醫療服務、醫學研究、支持培力」三大目標呼應聯合國永續發展目標(SDGs)中之目標3「健康與福祉」、目標4「優質教育」，以及目標17「多元夥伴建立」，由神經科主持及社會服務室組織病人及家屬成立「肌無力症俱樂部」，至今服務3,415位病人，服務涵蓋率超過全國半數以上。歷年培力98位病人與家屬成為關懷幹部協力照護，將診斷治療乃至情緒管理與社會復健進行垂直整合，提供身心靈三方面完整照護，使病人可以順利回到家庭、甚至挑戰自我事業及體力高峰，增進健康生活與福祉。發行肌無力症衛教刊物，提供病人優質疾病教育；致力於聯結全國服務，培力彰化秀傳醫院成立肌無力症中心及臺灣肌無力症關懷協會，結盟高雄長庚醫院辦理醫病交流；積極與世界接軌獲邀參與中國大陸及日本醫病交流活動，建立夥伴關係鼓舞MG（重症肌無力MyastheniaGravis）同學有力向前行。</p> <p> </p><p>Since its establishment in 1992, Shin Kong Wu Ho-Su Memorial Hospital has pioneered the creation of the Center for Myasthenia Gravis, which is dedicated to providing comprehensive care for patients with myasthenia gravis. Our approach integrates diagnosis, treatment, emotional support, and social rehabilitation, ensuring holistic care for individuals coping with this condition. The center’s activities align with Sustainable Development Goals established by the United Nations, particularly Sustainable Development Goals 3 (Good Health and Well-being), 4 (Quality Education), and 17 (Partnerships). The center strives to support the successful reintegration of patients into their families, workplaces, and communities, enabling them to thrive to the fullest extent possible. The center has cared for more than 50% of patients with myasthenia gravis nationwide, providing assistance to 3,415 individuals. Moreover, the center has empowered 98 patients and their families to take on leadership roles within the center’s support network. Additionally, the center has published materials dedicated to myasthenia gravis, disseminating valuable information to those in need. Furthermore, the center has extended its reach beyond its immediate vicinity, collaborating with Changhua Show Chwan Hospital to establish a myasthenia gravis club and support group. To foster global connections, the center has organized international patient exchange activities with counterparts in China and Japan, fostering knowledge sharing and solidarity within the global myasthenia gravis community.</p> <p> </p>