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.
