COMMUNICATION WITHIN FAMILIES ABOUT DUCHENNE MUSCULAR DYSTROPHY

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Abstract
An interview with parents of 23 boys with Duchenne muscular dystrophy (DMD) suggested that communication within families about the disorder presented difficulties for both parents and the boys. Spouses rarely discussed the condition and for many this was not a problem area but a way of coping by dealing only with the present. More problematic was the inability for parents and affected boys to communicate about the disorder. Lack of communication occasionally was responsible for carriers not being informed about the genetic nature of the disorder. Possible reasons for these patterns of communication are discussed and some approaches to helping families of boys with DMD are suggested.