專題討論8:婦幼醫療

S8-1
神經肌肉疾病之診斷及全人照護
Diagnosis and multidisciplinary care of neuromuscular diseases
梁文貞醫師/助理教授
高雄醫學大學附設中和紀念醫院小兒部

  Neuromuscular disease (NMD) is a disease entity consists of the disorders involved in lower motor neuron, peripheral nerve, neuromuscular junction and muscle. Most of them are hereditary diseases but some are required such as autoimmune-related myasthenia gravis and myositis. The clinical course of NMD is usually progressive which culminates in marked motor function impairment and complications involved in multiple systems. The NMDs thus result in the physical, psychogenic and economic burden of not only patients themselves, but their families and whole society. To date, effective therapy is available for only a few NMDs; patients and families therefore often drop regular medical visit and neglect the importance of standard care. In fact, even the most effective drugs could not reverse the majority of complications, such as scoliosis, joint contracture, respiratory failure etc. For that reason, multidisciplinary standard care provided by medical team together with patients’ associations, non-profit organizations and Governmental bureaus could play an important and practical role to prevent, identify or ameliorate these complications. The final goal to be achieved is therefore to improve the life quality of patients and families, and to further reduce the waste of medical and social resource for taking care of severe complications.