September 25, 2024 | 16:14
READING TIME: 3 minutes
Ten true stories to tell the story of life with cystic fibrosis. Giving a name to often invisible symptoms, talking about your dreams, emotions, fears and hopes. Saying what is usually left unsaid, to shine a spotlight on a disease that is still little known. This is the goal of ‘Fuori tutto – La vita con la fibrosi cistica tra sintomi e sogni’ (Everything out – Life with cystic fibrosis between symptoms and dreams), an information and awareness campaign promoted by the Italian Cystic Fibrosis League (LIFC) and the Italian Society for the Study of Cystic Fibrosis (SIFC), which revolves around a free exhibition open to the public from today to September 29 in Rome at Piazza San Silvestro, and then at the Grand Hotel Arenzano (Genoa) on the occasion of the annual LIFC Forum.
The exhibition at the heart of the campaign – supported by the unconditional contribution of Vertex Pharmaceuticals and presented today in the Capital – is inspired by the 10 stories that have been interpreted by as many young illustrators in works on mirrors. “A one-of-a-kind project and a special moment of sharing – explain the promoters of the initiative – to help patients living with cystic fibrosis feel less alone in the fight against the disease, give voice to their different experiences, between challenges and victories, and help people to identify with and interpret them, discovering them delicately, step by step, through images, shapes and colors”.
“We want to raise awareness of cystic fibrosis even among those who are not in contact with it every day, informing and raising awareness among the public about a disease that is still little known today – says the president of Lifc – Gianna Puppo Fornaro – The campaign and the exhibition aim to get people talking about this disease and to do so starting from the experiences of patients, their dreams and desires, to try to obtain an ever-improving quality of life for them”. The campaign will continue online thanks to the landing page and on Lifc’s social channels, and offline with the exhibition and a series of information materials that will be distributed during the exhibition.
Cystic fibrosis is a genetic disease that affects several organs, a note recalls. It is caused by the mutation of the Cftr gene, which leads to the malfunction or absence of the protein of the same name. “It is characterized by the production of excessively dense mucus, which causes chronic infections and progressive, potentially fatal damage in the lungs – describes Sifc president Francesco Blasi, director of the Department of Pathophysiology and Transplants at the University of Milan and director of Pneumology and Cystic Fibrosis at the Fondazione Irccs Policlinico di Milano – The symptoms are not visible, but they are highly disabling. In Italy, approximately 6,000 people live with cystic fibrosis, a community of patients who in recent years have had access to new therapies that have improved their life expectancy and quality of life”.
“We are proud to promote this initiative together with Lifc and Sifc to raise awareness among the general public of a disease that is often forgotten, also because it hides its symptoms. For us, it is very important to be a support for the cystic fibrosis community, and we hope that in our small way we can help bring out the needs, emotions and ambitions of patients affected by cystic fibrosis”, says Federico Viganò, Country Manager Italy and Greece Vertex Pharmaceuticals.
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