Doxa survey, 3 out of 10 Italians do not know invisible signs of the disease
Today, on the occasion of World Multiple Sclerosis Day, the exhibition PortrAits opens in Rome and Milan. Thanks to images generated by artificial intelligence (AI), it recounts the invisible symptoms of the disease. The initiative, together with the red lighting of the main illuminated Italian monuments, is part of the activities promoted by the Italian Multiple Sclerosis Association (Aism) for the National Information Week on Multiple Sclerosis (MS), from 29 May to 6 June .
The PortrAits exhibition was born from a need well photographed by the Doxa survey conducted for Aism in the first months of 2023 – explains a note from the association – on a representative sample of the Italian population, which highlights how 80% of those interviewed know that the MS is a neurological disease and know the visible symptoms: difficulty in movement (93%); lack of coordination (90%) and loss of strength (89%). However, invisible symptoms are unknown, such as memory loss (24%), depression (34%), visual disturbances (36%) and difficulty concentrating (37%), although 60% of respondents believe that people with MS inevitably develop severe disabilities and that the disease cannot be treated with drugs.
“The PortrAits exhibition – explains Francesco Vacca, national president of Aism – aims to fill this knowledge gap and raise public awareness of the invisible symptoms of multiple sclerosis. Through the testimonies of people with MS and the use of AI to generate images representing their symptoms, with the exhibition we wanted to communicate in a powerful and exciting way what people with multiple sclerosis experience on a daily basis”. Multiple sclerosis is one of the most serious diseases of the central nervous system and largely affects young people – 50% of people are under 40 – women twice as many as men.In Italy there are about 140,000 people who live with this disease: every year there are 3,600 new diagnoses, 1 every 3 hours.
Aism, starting from the stories of 10 testimonials with Sm, has created the open air exhibit of PortrAits in which the invisible symptoms – the arm like a piece of ice, the tongue intertwined, the head on fire, the legs heavy as boulders, tiredness that forces you to stay in bed, blurred vision – reworked with technology, together with communication professionals, have generated surprising images, far from the reality visible to the eyes, but close to the actual feeling of those who live, every day, with sm. “The term artificial intelligence (Ai) instinctively leads us to make a comparison with human intelligence – underlines Ivano Eberini, associate professor of Biochemistry at the University of Milan – It would be a mistake to think that now AI can replace the intelligence and capabilities of man, it is more of a supplement or support for specific activities.The most widely used Ai algorithms help in classification, decision-making processes and, as in PortrAits, in the generation of content.This exhibition it is an example of virtuous use of generative AI”.
Among the people who have lent their stories to the project – the note refers – is Antonella Ferrari, godmother of Aism, writer, actress and author of the theatrical show in which she stages her condition as a person with Sm. “Sometimes my vision blurs as if I were seeing a sky full of clouds – Ferrari recalls – It was interesting for me to find out how my invisible symptom was reinterpreted by AI. I think this project makes it clear to everyone what it means to live with this disease and can help people with MS fight even more for their rights.”
“Aism, through its Foundation (Fism), has always promoted the use of technologies to improve the management of the disease and the quality of life of people with MS – says Mario Alberto Battaglia, president of Fism – An example of this is the Registry italiano multiple sclerosis and related pathologies and the Barcoding Ms project – an integrated database of clinical, genetic, imaging and patient measurements data that will provide a personalized picture of the clinical progression and biology of the disease – as well as the development of an app that allows the self-assessment and monitoring of cognitive functions of people with multiple sclerosis. And again – continues Battaglia – the participation in the European project Alameda, which uses AI to bridge the gap between early diagnosis and therapeutic treatment in neurological diseases. With PortrAits we wanted to demonstrate that AI, if used virtuously, can also help in communication, to give a new voice to people with MS”.
The PortrAits campaign – the English word for ‘portrait’ which includes the reference to Ai – is created thanks to the unconditional contribution of: Merck Italia (Main Sponsor); Bms (Platinum Sponsor); Biogen Italia, Novartis Farma, Roche and Sanofi (Gold Sponsor); Janssen-Cilag, Sandoz and Bil Benefit (Silver Sponsor).
“For over 20 years, Merck has been committed to finding solutions that improve the lives of people with MS – says Maria Cristina Leone, Neurology Business Unit Head of Merck Italy – by meeting their unmet needs. To do this we start by listening, because it is only together with people that we can achieve our goal. PortrAits is the demonstration of how much, by listening to people with Sm, we can better understand where to direct our innovation effort”.
Aism, in addition to the PortrAits exhibition in Rome, in Piazza San Silvestro and Milan, in Via Dante, for the Information Week on MS, promotes meetings, demonstrations and events throughout Italy until 6 June to raise awareness among citizens about the disease, the quality of life of people with MS and their caregivers, the protection of their rights and the importance of scientific research. Among the monuments that will be illuminated in red this evening are the Pirellone in Milan, the Mole Antonelliana in Turin, Herculaneum and the institutional buildings of the Senate and Palazzo Chigi.