‘Dialogues of MS’ made a stop in Rome, the series of events that are taking place across Italy offering a moment of in-depth analysis and discussion between people with multiple sclerosis and their caregivers in a multidisciplinary dialogue with the experts who, today, were those of the Department of Human Neurosciences of the Umberto I University Hospital. The format, which aims to improve understanding of the disease and its management, is a sort of bridge between reality and digital because it arises from the meeting of 2 digital tools dedicated to life with multiple sclerosis – Cleo app and ‘I don’t freak out’ – which, outside the screens of smartphones and tablets, brought together the life stories of patients, family and friends, with the multidisciplinary panel of experts. Cleo app (cleo-app.it) – details a note – is the application dedicated to those living with MS created by Biogen with the patronage of the Italian Multiple Sclerosis Association (Aism), of the Italian Society of Neurology (Sin), while ‘Io non sclero’ (iononsclero.it) is the awareness project developed by Biogen and Fondazione Onda, the national observatory on women’s and gender health, in collaboration with Aism and with the patronage of Sin.
There were many contents and interventions during the ‘open day’ to make people reflect on the importance of a multidisciplinary approach to respond to the needs of the approximately 137 thousand Italians who face this neurological disease. “Multiple sclerosis – explains Antonella Conte, neurologist and medical director of the Human Neurosciences department, head of the Multiple Sclerosis Center of the Umberto I University Hospital in Rome – is a highly complex disease”. This “means that the people who are affected need global, multidisciplinary care, which cannot be limited to the sole management of drug therapy, to respond effectively to people’s needs. The chronicity and degenerative nature of the pathology – adds the professor – trigger changing daily challenges that require an integrated care network with the aim of preserving the health and autonomy of the person with multiple sclerosis”.
The diagnosis of MS “occurs in most cases between the ages of 20 and 40 – recalls Conte – we are therefore talking about young people, in a delicate phase of life in which important personal, professional and social life goals are planned, which are not absolutely ‘put aside’ but must be taken into consideration within the process of taking charge and managing the disease. Here at the Umberto I University Hospital we offer support that goes beyond the pure therapeutic aspect, dedicating great attention to the rehabilitation process of people with MS, thanks to the joint work of various professionals, including physiotherapists, occupational therapists, speech therapists and psychologists”.
The guests were also able to listen to the testimony of Luana, Ambassador of the digital community of ‘Io non sclero’, a project which from 2016 to today has collected hundreds of testimonies of life with MS and which brings together a community of over 79 thousand on Facebook people. The Cleo application was also the protagonist of the event, developed in 2018 and now with over 200 thousand downloads. A digital tool dedicated to supporting those living with MS in the daily management of the disease, with various contents and services, such as a section dedicated to psycho-physical well-being activities and programs, an ‘explore’ area with extensive information content, as well as sections dedicated to multidisciplinary insights, in areas such as nutrition, physical activity, sexuality, psychological, physiologic and family planning aspects.
“With ‘Dialogues of MS’, together with Biogen, we have built a real journey in stages across the territory – underlines Francesco Vacca, national president of Aism – creating precious opportunities for discussion between people with MS, their family members, and the experts of the Centers local references. I believe that these meetings represent important moments of sharing, but also of mutual growth and enrichment, fundamental for broadening the understanding of the management of this complex disease and adopting the entire set of tools, digital and otherwise, that can be useful for tackling the everyday life with MS. A value – that of sharing – which represents the backbone of the activity that Aism has been carrying out for years throughout Italy, to give voice to the needs of people with MS and network to provide concrete answers.”
“Multiple sclerosis – reiterates Giuseppe Banfi, CEO of Biogen Italia – is a highly complex neurological disease and its management requires constant attention to the evolving needs of the many people who experience it every day. To address this complexity, dialogue and discussion are needed on the many aspects that go beyond the strictly therapeutic sphere, to embrace the many factors that contribute to determining the quality of life of people with MS. Initiatives such as Cleo App and Io Non Sclero – he continues – go precisely in this direction and for years have shown us the importance of sharing and commitment to improve the daily management of multiple sclerosis. The new format “Dialogues of MS” today takes a further step forward to encourage dialogue and discussion, crossing Italy and highlighting the excellence of many realities where people with MS are welcomed and assisted every day”.
#Dialogues #Rome #promotes #multidisciplinarity #multiple #sclerosis