Multiple sclerosis, 1 diagnosis every 3 hours in Italy. Young people and women are more at risk
The national week starts in Genoa with 'PortrAIts: a journey through 140 thousand stories, some of which have become portraits
GENOA – To those who wonder what multiple sclerosis is, a disease for which awareness week is being launched today from Genoa, which will culminate in its World Day on May 30 >, the answer is that it is the combination of many stories: there are at least 140 thousand in Italy. None is just any story. Some have become portraits, or rather ‘PortrAIts’, of the open air exhibition that Aism (Italian Multiple Sclerosis Association) organized today in Largo Pertini in Genoa, in front of Piazza De Ferrari.
The PortrAIts belong to Antonella, Ivan, Andrea, Cristina, Eleonora, Francesco, Giuseppe, Ileana, Nevio, Rachele. Each of them revealed the most intimate and fragile part of themselves, without veils and with generosity to Artificial Intelligence to make it “visible” to everyone and make it known. Others will soon be added to their stories, with other stories and other experiences, other faces and new voices. It is they, with their stories – together with the volunteers, the people with Multiple Sclerosis (MS) and all their families, the researchers, the testimonials and those who are committed daily to giving them and guaranteeing answers and services – the ambassadors of this Week National, which started in Rome last year.
This year, the engaging message to raise awareness of a serious, chronic and disabling disease, which is still too little known, starts from Genoa: “We want to launch the National MS Week from the city where the national headquarters of Aism is located and from the place from which innovative and excellent research on MS and related diseases starts to reach the world. This national week today starts from Genoa but will then stop in at least six other Italian cities and will end in the Regina room Parliament in Rome, together with the highest Italian institutions, on 31 May”. The speaker is the president of Fism, the Foundation of the Italian Multiple Sclerosis Association, a historic volunteer of Aism. His name is Mario Alberto Battaglia, he began his commitment within the Association when he was a young medical student: with his guidance Fism shares the strategic paths and areas at an international level most promising research to invest and work on.
With him the national president of the Association, Francesco Vacca, who when excitedly talks about PortrAIts, explains how this is “an exhibition that has enormous communicative power, because it is capable of revealing hidden sides of this disease, forcing her to throw off the mask. Thanks to artificial intelligence, the invisible symptoms of MS have been revealed. And they have been put on display, literally gap in knowledge, and therefore in raising awareness, about the invisible symptoms of multiple sclerosis. It is thanks to all the people with MS who got involved, who together with the experts ‘educated’ artificial intelligence and generatedimages. powerful, capable of moving attention and feelings“. This is somewhat the meaning of National Week: to raise awareness and raise awareness of a disease that in Italy mainly affects young people and women with a diagnosis every three hours. For this reason, a large number of monuments throughout our country (thanks to the 98 sections present in the area), on the night of May 30th, will light up in red, to turn on a light of attention towards a chronic and disabling disease , which has not yet been defeated and which involves more than 140 thousand people in Italy.
PortrAIts, an event that enjoys the High Patronage of the President of the Republic, the patronage of the Municipality of Genoa and the Liguria Region, will travel again, to make certain messages reach far away, embracing Italy and the world. And in fact, after Genoa,PortrAIts will be hosted in other Italian cities: Bologna, Naples, Turin, Varese and Vicenza. Furthermore, in agreement with Anci and Unpli, for the next 12 months it will arrive in other regions, on the occasion of local initiatives; it will also be present within the G7-Inclusion and Disability, which will be held in Umbria on 14, 15 and 16 October 2024. ‘It is with great pleasure that the Liguria Region welcomes this exhibition which aims to raise citizens’ awareness of multiple sclerosis, an autoimmune inflammatory disease which, if not appropriately diagnosed and treated, can lead to disabling outcomes with a poor quality of life. As with many other diseases, the best approach is information, the emergence of even less frequent signs and symptoms can in fact avoid underestimating and delaying the diagnosis. Research aimed at developing therapeutic opportunities capable of stabilizing and chronicizing the clinical picture can also play a strategic role in its treatment to guarantee a normal life for those affected. We therefore thank the friends of Aism for having included Genoa in the national tour of this exhibition. The aim therefore – declares Angelo Gratarola, Health Councilor of the Liguria Region – is not to talk about multiple sclerosis only among professionals or among people who are directly involved in it, but to open up to all citizens to create collective awareness of a disease that unfortunately affects young people and especially females, one of the most alive and vital parts of society’.
Among the stories of this National Week, there is also that of research on MS, which precisely through Fism is “made in Genoa” and represents excellence and innovation. Fism’s investments in Liguria in recent years have amounted to over 10 million euros, supporting important research projects with the University of Genoa. Among the studies, those of magnetic resonance imaging in the field of neurorehabilitation have demonstrated how a rehabilitation treatment is capable of inducing effective structural and functional motor changes at the brain level, capable of counteracting the progression of the disease. The studies on the use of stem cells are very important, both mesenchymal – which have reached human trials – and hematopoietic with autologous cell transplantation which has opened a new way to treat the most aggressive forms of multiple sclerosis.
Thanks to the structured collaboration with the Department of Neuroscience, Rehabilitation, Ophthalmology, Genetics and Maternal-Child Sciences (DINOGMI) of the University of Genoa, Fism researchers have created the Research Center for the application of magnetic resonance imaging to study of multiple sclerosis and similar diseases; thanks to the agreement between Aism and Fism, with the San Martino Polyclinic and the University of Genoa, there is a new Magnetic Resonance Research Center for Multiple Sclerosis, equipped with a high-end 3 tesla Magnetic Resonance Tomograph, purchased by Fism, new studies and new research that will provide new answers. Furthermore, the School of Rehabilitation Research for MS is born in Genoa. The rehabilitation center which is a model in Europe is located here.
In a few lines, another story is revealed: Aism and Fism are in first place in Italy (third in the world), among the funding bodies of MS research: “In the last 5 years Fism has invested over 40 million euros, which corresponds to 80% of private investments in MS research in Italy, activating important international collaborations”, explained Battaglia. But that’s not all yet. The Aism toll-free number is located in Genoa (800.80.30.28), which offers correct and up-to-date information to anyone who feels the need for a reliable and immediate answer to their doubts about the disease and related problems. A team made up of neurologists, social workers, rehabilitation workers, legal consultants and the secretariat responds.
The MS and related pathologies Observatory is also located in Genoa, and is the instrument through which Aism protects the full social inclusion of people, in every possible context, exercising constant advocacy action: it dialogues and deals with the Institutions, with the relevant bodies, with the entire community. It promotes programs and concrete actions capable of impacting social, health and socio-health policies. Every year it draws up ‘The Multiple Sclerosis Barometer’, which is the largest collection of data and information that tells the story of MS in Italy. This document is delivered by the national President of Aism and by the territorial sections to the institutions during World MS Day. It will happen again this year. In the usual appointment in Rome, in the Queen’s Hall in the Chamber of Deputies on Friday 31 May. So in the end, if someone were to ask themselves what Aism’s National MS Week is, the answer could be: it’s a long week, full of stories and life. It is value for everyone.