Key words: dystrophy, Duchenne, adolescence
Duchenne dystrophy is a genetic pathology characterized by a progressive degeneration and weakening of the voluntary muscles that gradually leads to the loss of the ability to walk and to the freedom of movement. In the majority of cases, the complete loss of autonomy occurs during the transition between childhood and adolescence. It’s very hard for teenagers affected by dystrophy to develop their own psychology, their body and to recognize their qualities as willing persons, able to manage their lives and choices. They simultaneously face two problems that make it difficult and complex to have a personal relationship with their own body and with other people: On one hand, they share with their peers the pubertal timing, the desire of autonomy (love and friendship); and on the other hand the progressive degeneration of muscular functionality separates them from their peers and from being autonomous. It’s very difficult to plan a personal project for the future when the limitations imposed by the illness don’t really allow it. It’s painful to realise that some goals can never be reached or that certain tasks may take longer than it would take their peers. In addition, families often become hyper protective of their son and this attitude is amplified by the necessity to do some things for the son and “in the son’s place”. The research project, led by Minotauro in collaboration with the Clinique Center Nemo (Niguarda Hospital) and with the UILDM (Italian Union for muscular dystrophy) was proposed to nine teenagers affected by Duchenne dystrophy and to their parents. The project has two goals: the first is to explore the teenagers’ sorrow (also helping parents to face their problems), secondly to support their emotional development, helping to strengthen the individual, enabling them to catch up with what they lost before they had started to depend on their family and closing the gap between their peers.
For this reason, after a first phase of study (Youth Self Report of Achenbach and semi-structured interview) the teenagers were offered a space where they could speak about their difficulties during this specific phase of their life. At the same time, the project offered the parents food for thought that helped them to find answers to those difficult questions and problems. The starting point was the group and it was a new experience for everybody. The group was a sharing tool and represented a free and secure place where it was easy to speak about emotions, thoughts and loneliness. The group experience gave the teenagers the opportunity to compare themselves to others on delicate and intimate issues for the first time. In this way they discovered new points of view, gradually moving from a passive attitude, waiting for external help, to a more active one, learning to be autonomous. Simultaneously, parents could share delicate issues and fears, trying to find new solutions and expressing their need to have time for themselves.
Traduzione di valentina schiavoni e suzanne hobley