Hands deformed by a rare genetic disease, which draw the symbol of peace. Also a way to make peace with your illness. They are those represented by Katiuscia Tarabella in the drawing entitled “Me and Peace”, among the winners of the 15th edition of the literary, artistic and musical competition ‘The Flight of Pegasus’. Among beginners and professional artists, 18 were awarded at the conference “Science and art together for rare diseases”, organized by the National Center for Rare Diseases (Cnmr) of the Istituto Superiore di Sanità and by the Uniamo Federation (Italian Federation of Rare Diseases).
The competition, this year was dedicated to international armed conflicts, was born 15 years ago to offer expressive spaces to people with rare conditions, their families and health professionals, but also to spread knowledge about the difficulties faced by rare patients and their families. “I thought a lot about what to draw on the subject and how to link it to my pathology”, explains Katiuscia Tarabella, from Seravezza, in the province of Lucca, who suffers from Charcot-Marie-Tooth disease, a hereditary neuropathy in which the muscles weaken and they shrink. “Looking at a photo of my hands drawing, I got the idea of reproducing them, together with the peace symbol. This drawing actually talks about me and my pathology. For me it also represents making peace with my life partner” .
“Not only research and pharmacological therapies, the management of rare pathologies can also make use of disease stories. Stories that can find expression through the various forms of art, thus helping to shed light on the needs of patients – declares Marco Silano, acting director of the Cnmr of the ISS – Science and art have a role as complementary therapy for a multidisciplinary approach to health“.
The stories of people with rare diseases, concludes Annalisa Scopinaro, president of Uniamo, “find narrative expression also through art, in all its forms: with pencil, pen, brush, score or the lens of a camera”.
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