World Multiple Sclerosis Day: Monuments light up red
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137 thousand. There are many people living with multiple sclerosis in Italy, where about 3,600 new diagnoses are made each year. Numbers on which it is important to reflect today, World Multiple Sclerosis Day, promoted in our country by the Italian Multiple Sclerosis Association (AISM). In fact, we are talking about a chronic, disabling and unpredictable disease, whose annual social cost amounts to 6 billion euros between direct and indirect costs: on average, 45,000 euros are spent per year for each patient, which reaches 84,000 in very serious. Nor should we forget people with related diseases, including neuromyelitis optica (NMO) which account for another 1,500-2,000 cases. There are currently 177 centers throughout Italy participating in the Multiple Sclerosis and Related Diseases Registry, which currently collects data from over 80,000 people.
These are some of the (many) data contained in the new Barometer of Multiple Sclerosis and related pathologies 2023, which has reached its eighth edition this year, and which will be officially presented on 31 May in the Sala Capitolare of the Senate. In fact, not only one day but the whole week is dedicated to multiple sclerosis: seven days full of events to turn the spotlight on those who live with this autoimmune and neurodegenerative disease and on research progress. And on May 30 the main monuments of Italy will turn red to remind everyone of World Day.
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What is MS
MS mainly affects young adults, between the ages of 20 and 40, but it can also appear very early, in childhood. It is also a more female than male disease, with a ratio of about 2:1. The causes are not yet known and there is no cure. What is known is that the immune system targets myelin, the substance which, like a sheath, covers nerve fibers and which is essential for the transmission of nerve impulses: myelin is progressively destroyed by an inflammatory process, while nerve cells are affected by a degenerative process. These processes can occur in any area of the brain: this is why MS can manifest itself with many different neurological symptoms – over 30 are known – because no case is the same as another and because the clinical course can change over time. Among the many signs of the disease there are also problems with balance and coordination, blurred vision, tiredness since waking up.
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The two forms of MS
In 85% of cases, MS presents in the “relapse and remission” form, in which symptoms appear suddenly in an acute way, to then regress in part or completely. Over time, however, almost all progress to the secondary progressive form, in which symptoms continue to worsen. For the remaining 15% of cases, however, the symptoms worsen irreversibly from the onset of the disease (primarily progressive form). Precisely the complexity of the forms and the variability of its evolution make both early diagnosis and overall management difficult, as well as rehabilitation alongside pharmacological therapies – to activate the plasticity of the nervous system, contain the progression of disability and prevent complications – and symptom treatment, to improve the quality of life of people with MS.
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The events of the week
To raise awareness of MS as a social disease and the importance of research, today the main Italian monuments will be illuminated in red and two exhibitions will be inaugurated, in Rome and Milan. The FISM Congress – Italian Multiple Sclerosis Foundation “Our pathways to cure” will also open in the capital (30 May to 1 June). In 2022 alone, AISM with its Foundation funded research projects for over 5 million euros and which counts 96 active projects, 153 research groups committed to research of excellence, 154 publications in qualified scientific journals. The day will also see the awarding of the Rita Levi Montalcini Prize. Finally, for 31 May, in addition to the presentation of the Barometer, the signing of the AISM/FISM Bill of Rights by the institutions and the launch of the Multiple Sclerosis and related pathologies Agenda 2025, which will dictate the priorities on which to work, is expected.
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