S. Frisina
Abstract
Born from the need to establish sharing relationships between families with haemophilic children and with haemophilic adults, the Haemophilia Association of Reggio Calabria has always moved around the area trying to use all the possible resources it provides. Meetings were organized between families to share their experiences and their own experience with the disease. Meetings between families and expert mediators and psychologists to understand better how to explain the existence of the disease to their children and face the difficulties of everyday life. The children related to each other, sharing the experience of growing up, of facing a reality that is not always the same as that of others.
The various convivial moments, including with adults, have made it possible to establish a strong link between the past, present and future of haemophilia in everyone's life, in the innovation of treatments, in the new possibilities of approach. Not infrequently, in facing the diagnosis of a rare pathology for oneself or for one's children, the first feeling is that of loss and loneliness, as if what has happened to us is an event that cannot be shared with anyone else, which cannot be understood and above all unique because rarity makes you feel just like that, rare, unique in the most negative sense.
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