Multiple Sclerosis: research, integrated care and inclusion the priorities of Agenda 2030
The disease affects the central nervous system and registers over 3,600 new diagnoses each year: progress but still many critical issues to be addressed
Key points
A red light in a monument or institution building. And then a poster and that red thread that unites, sews and tells the stories of those who live with multiple sclerosis. The disease that affects the central nervous system, which 150,000 people in Italy have to deal with and which every year registers more than 3,600,000 new diagnoses.
On 30 May, monuments light up red
The disease mainly affects young people between the ages of 20 and 40, with a prevalence in women at a ratio of 3 to 1 compared to men, and despite the progress in research, there is still a need to "overcome territorial inequalities in access to care" and it is also necessary to "strengthen care and make rights and social inclusion for people with multiple sclerosis truly enforceable". These are the objectives contained in the Agenda for Multiple Sclerosis and Related Pathologies 2030, presented (on 28 May in the Chamber of Deputies) by Aism and the Fism Foundation within the framework of the National Multiple Sclerosis Week, which will culminate on 30 May on World Multiple Sclerosis Day when the Chamber (but also monuments in other cities in Italia) will light up red.
Progress has been made over the years, but critical issues, as the Sm Barometer points out, remain. "More than 57 per cent of people needing home care say they do not receive it, while more than 60 per cent report incidents of discrimination in their daily lives".
The aim is a step change in which priorities are set to improve the quality of life, rights and care for people with multiple sclerosis over the next five years.
More severe form in a third of cases
'One third of people with MS have a progressive form, the most severe, which can be the evolution of a form with successive attacks,' the Agenda emphasises, 'with the possibility of disability becoming significant. The symptoms and the course of the disease vary from person to person, but in each case there is a 'before' and an 'after' diagnosis, because people's lives change radically. In fact, other difficulties are added to the diagnosis and the course of a chronic illness: psychological, relational, social, and work-related. Every life context and future project must come to terms with the presence of the disease and its management. Inevitably the family and the whole relational sphere are always involved, with the same or almost the same pervasiveness'.
