A book to explain Duchenne muscular dystrophy to affected children

The team from the Marseille Neuromuscular Reference Centre has designed a small book for children with Duchenne muscular dystrophy (DMD). This didactic and abundantly illustrated work was given to nine children with DMD and their parents, within a variable period of time after the announcement of the diagnosis. Its usefulness has been the subject of a prospective study. Its results show that the book: 

  • was very well accepted by the interested parties and the families and all found it useful, 
  • served as a communication tool allowing a better dialogue between parents and child about the disease,
  • must be accompanied and explained,
  • contributes to a healthy relationship between the child, parents and caregivers.

Its wider distribution is under study.


Use of a book to disclose a diagnosis of Duchenne muscular dystrophy to a young child: A pilot study. Audic F, Catillon P, Berbis J, Paermentier L, Gizard F, Chabrol B. Arch Pediatr. 2022 Jan;29(1):51-55.