Abstract
Parental Experiences with Duchenne Muscular Dystrophy: Feelings of loss and Empowerment
Highlights
Duchenne Muscular Dystrophy Muscular dystrophies are a heterogeneous group of diseases, with symptoms including muscle weakness that affect mobility
Doctors confirm the parents’ concerns that the symptoms gradually become more generalized and obvious. This realization comes with feelings of sorrow and despair as parents observe the irreversible progression of Duchenne muscular dystrophy (DMD) despite all their efforts: «... we were here 6 months ago and...his arms were better... it’s out of control...they’re worse
Our results suggest that some parents experienced contact with others as painful and confusing, mainly because they were confronted with a painful reality of a later stage of the disorder
Summary
Duchenne Muscular Dystrophy Muscular dystrophies are a heterogeneous group of diseases, with symptoms including muscle weakness that affect mobility. Duchenne muscular dystrophy (DMD) is among the most common muscular dystrophies of childhood with prevalence at 1:3500 male births regardless of race or ethnic origin (Emery, 1998). It is a degenerative disease, inherited as an X-linked recessive genetic disorder caused by a mutation or lack of the protein dystrophin. It causes progressive weakness by affecting all body muscles and leads to early death (Emery, 2002). Patients’ survival age reaches 25 – 30 years old, with the development of medical care and the use of respiratory support (Emery, 2002)
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