Patient stories, fragments of life and little visible aspects of multiple sclerosis. All this is PortrAIts, the awareness campaign on MS broadcast on Rai channels, which in fact marks the beginning of the National Multiple Sclerosis Week of Aism 2024, dedicated to information and awareness on the disease. From outdoor exhibition to TV commercial: this is the evolution of PortrAIts, an initiative promoted by the Italian Multiple Sclerosis Association under the High Patronage of the President of the Republic.
The television commercial, broadcast from 26 May on Rai channels, features Clara, a person with SM from Turin and an Aism volunteer. Her invisible symptom is chronic fatigue, one of the most common and disabling ones in multiple sclerosis. In a recent international study conducted by Proms, of which Aism is one of the leaders – reports a note – on 5 thousand people with MS in the world, in fact, over 80% of respondents reported fatigue as something that significantly impacts quality of life. Speaking about it, they define it as “feeling physically or cognitively tired, even when you first wake up, and it does not improve with rest”. Clara herself explains: “It’s like an invisible force that prevents you from doing what you want, from telling your legs to take that step, from getting up from that chair”. This is why, in her commercial, Clara finds herself in the office, immobilized, as if invisible ropes were holding her back in the chair, while her colleagues, with indifferent looks, do not understand what is happening to her; exactly what could happen in real life.
According to a Doxa survey, 80% of Italians know that MS is a neurological disease; however, while the visible symptoms are known to the population, the invisible ones are almost unknown, such as memory loss (24%), depression (34%), visual disturbances (36%) and difficulty concentrating (37%). . “PortrAIts has enormous communicative power. It has the ability to reveal hidden sides of this disease, forcing you to throw away your mask. Thanks to artificial intelligence, the invisible symptoms of MS have been revealed – he explains Francesco Vacca, national president of Aism – And they were put on display, literally. PortrAIts was created with the aim of filling the large knowledge gap, and therefore raising awareness, about the invisible symptoms of multiple sclerosis. Thanks to all the people with MS who got involved, participating with the experts in ‘instructing’ AI, powerful images were generated, capable of moving attention and feelings.”
But the campaign doesn’t stop here, Aism says. She will also live on the dedicated website www.portraitsm.it, where it will be possible to know not only Clara’s story, but also those of all the protagonists who will share their life experience with the invisible symptoms of MS. These stories will delve into the most common disorders, making them easily understandable to the general public. They are the stories of Aism’s godmother, the actress Antonella Ferrari; of Ivan Cottini, a dancer who breaks down the barriers of MS with dance, and of many people with the disease such as Alessandro, Andrea, Clara, Cristina, Francesco, Eleonora, Gianluca, Giuseppe, Ileana, Nevio, Pinda, Rachele and Roberto. Each person brought a piece of their life, revealing the most intimate and fragile part of themselves, giving themselves generously to artificial intelligence to make it ‘visible’ to everyone. To make it known. People’s stories can be listened to through podcasts published on the website www.portraitsm.it. Each episode is introduced by Vic and Marisa from Radio Deejay.
The PortrAIts exhibition also continues its journey through Italy, after the success achieved in Rome, Milan, Bergamo and Florence. With 10 panels that tell as many stories and symptoms, the exhibition raises public awareness of the hidden side of MS, highlighted thanks to the help of AI. After the square in Genoa where PortrAIts, last May 23rd, opened the information week on MS and where it will be visible until May 31st, there will be 4 other Italian cities, Naples, Varese, Vicenza and Turin, which, on the occasion of World Multiple Sclerosis Day on May 30, will host the exhibition. Furthermore, in agreement with Anci and Unpli, for the next 12 months it will arrive in other regions, on the occasion of local initiatives. And it will also be present within the G7-Inclusion and Disability, which will be held in Umbria on 14, 15 and 16 October 2024.
The PortrAIts campaign enjoys the patronage of Fish (Italian Federation for overcoming handicaps), the Onda Foundation, Sin (Italian Society of Neurology) and Sno (Society of neurologists, neurosurgeons, hospital neuroradiologists), and is carried out with the sponsorship non-conditioning by Biogen, Merck Italia, Roche, Sanofi, Bristol-Myers Squibb, Novartis Italia, Sandoz, Viatris.
Chronic, unpredictable and disabling – the note recalls – multiple sclerosis is one of the most serious diseases of the central nervous system. It often causes disability, even serious ones. 50% of people with MS are young and not yet 40 years old. 10% of diagnoses also concern young people under 18. It affects women twice as often as men. It is the leading cause of neurological disability in young adults after trauma.
In Italy there are over 140 thousand people affected by multiple sclerosis, 3,600 new cases every year: one every 3 hours. Among the pathologies related to MS there are neuromyelitis optica (Nmo), which have a pattern of needs and health and social care interventions similar to MS. They are rare diseases, with 1,500-2,000 cases in Italy.
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