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照顾患有杜氏肌营养不良症的智障儿童所面临的挑战。

Challenges in the care of the retarded child with Duchenne muscular dystrophy.

作者信息

Hsu J D, Lewis J E

出版信息

Orthop Clin North Am. 1981 Jan;12(1):73-82.

PMID:7207993
Abstract

Recent psychological testing and neuropathologic studies support the occurrence of relative retardation, an in some cases severe retardation, in patients with Duchenne muscular dystrophy. Muscle deterioration and wasting are associated with the natural progression of the disease. Progressive physical weakness can be described in the following stages: early, walking, wheelchair, and late. The more emotionally mature the family, the more effective they are in coping at each stage of the disease. Nevertheless, a constant stress is present in all families. This stress can increase or plateau at the various stages and as new problems are encountered. When mental retardation is significant, the stress on the family become even more marked.

摘要

近期的心理测试和神经病理学研究表明,杜氏肌营养不良症患者会出现相对智力迟缓,在某些情况下甚至是严重智力迟缓。肌肉退化和萎缩与疾病的自然进展相关。进行性身体虚弱可分为以下几个阶段:早期、行走期、轮椅期和晚期。家庭情感越成熟,在应对疾病的各个阶段时就越有效。然而,所有家庭都会持续面临压力。这种压力在不同阶段可能会增加或趋于平稳,并且会随着新问题的出现而变化。当智力迟缓较为严重时,家庭所承受的压力会更加明显。

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