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二十年——爱荷华肌肉诊所:回忆与展望

Twenty years-Iowa muscle clinic: reminiscences and prospects.

作者信息

Zellweger H, Simpson J, Ionasescu V

出版信息

Eur J Pediatr. 1982 Feb;138(1):17-22. doi: 10.1007/BF00442321.

Abstract

The activities of the last twenty years of the Iowa clinic for neuromuscular diseases are briefly reviewed. Main emphasis in this paper is on management and guidance of the patient with Duchenne muscular dystrophy (DMD) by the families, the school and the public at large. Guidance and treatment given to our patients is briefly described. It is well known that chronic debilitating disease affects not only the patient but the whole family; management of DMD should therefore include the parents and siblings of the patient. Preventability of DMD is illustrated by the experiences in our clinic. The importance of early carrier detection and genetic counseling is stressed. Possible future developments in DMD research are briefly mentioned.

摘要

本文简要回顾了爱荷华州神经肌肉疾病诊所过去二十年的活动。本文主要强调家庭、学校和广大公众对杜氏肌营养不良症(DMD)患者的管理和指导。简要描述了给予我们患者的指导和治疗。众所周知,慢性衰弱性疾病不仅影响患者,还影响整个家庭;因此,DMD的管理应包括患者的父母和兄弟姐妹。我们诊所的经验说明了DMD的可预防性。强调了早期携带者检测和遗传咨询的重要性。简要提及了DMD研究未来可能的发展。

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