Stories of people with multiple sclerosis beyond Covid, the campaign begins

Multiple sclerosis must not prevent those affected from doing what is most important to them, from fulfilling their dreams and achieving their goals. A warning that today, a year and a half after the start of the Covid-19 pandemic, is even stronger and must push those living with the disease to never give up and continue their treatment path. This is the ‘fil rouge’ that links the testimonies to the center of the campaign “Check mate. Bold stories of people with multiple sclerosis“, created by Novartis Italia in collaboration with Aism – the Italian Multiple Sclerosis Association and a team of clinical experts.

Video stories that want to be an inspiration for all those people who have experienced the diagnosis and, more recently, the disease during the Covid-19 emergency, as a reason for arrest, showing that the limits imposed by the disease can be overcome. Stefano’s solitary journey on foot, Alessio’s 100 days in motion towards North Cape, the professional success of Chiara – who took over the family business – and Marco – who with his tenor stamp was applauded in many theaters – as well as Anna’s desire for motherhood fulfilled, Simone’s courage in participating in the Ironman and Valentina’s desire to help those like her who live with multiple sclerosis. The stories will live on Novartis’ BrainzoneIt Facebook page and on the website www.livinglikeyou.com/it/match-check.

Personal experiences – reads a note – that tell how, with determination and with the right support, it is possible to take back those spaces that are imagined lost due to illness and the limits imposed by the lockdown, scoring one’s winning move, checkmate, which puts multiple sclerosis in the corner.

“The chess metaphor represents well the game a person has to play against multiple sclerosis (MS) from the time of diagnosis: as the most difficult chess games are won thanks to a good attack and defense strategy, mixed with a great ability to adapt, in the same way in the difficult game against illness you need courage and determination, a relationship of trust with the their doctor, the support of their loved ones “, comments Luigi Lavorgna, neurologist of the Aou ‘Luigi Vanvitelli’, Chair of the ‘Digital’ study group of the Italian Society of Neurology (Sin).” It is thanks to them that the pieces on chessboard (therapy, rehabilitation, support, work, hobbies, etc.) can move by predicting and blocking the opponent’s moves, thus bringing the player closer to victory “, he emphasizes.

The stories of ‘Checkmate’ touch all aspects of life, from the professional to the most intimate and personal, such as parenting, and tell all the areas in which SM often represents a limit. This apparently unbeatable opponent in the last year has also been joined by the health emergency from Covid-19: according to the Aism Barometer, one of the most serious effects of the pandemic is certainly the psychological impact. In fact, situations of strong social isolation, anxiety and depression have been combined with a widespread lack of distance psychological assistance, both for people with MS and for their caregivers, who have found themselves facing situations of strong pressure, also related to the difficulties in reconciling work commitments at home with the increased needs for care and assistance of family members, in particular those with more severe disabilities.

“Fortunately, in recent years, in parallel with the increase in knowledge on the biological mechanisms underlying the disease, new treatment options have been identified and developed, some already available to the medical profession, others on the way”, says Claudio Gasperini, coordinator of the Multiple Sclerosis Study Group of Sin. “This allows us on the one hand to diagnose the onset of the disease earlier and monitor its progress, and on the other hand to identify the best solution for each patient, calibrating, almost personalizing, the therapeutic path in the light of the specific clinical picture” .

Among the weapons to fight the disease, there has always been scientific research, which makes it possible to have increasingly innovative drugs and early diagnosis available today. Yet only in 2020, due to the pandemic, was there a general postponement of non-deferrable health services: 88% of the Sm Centers postponed or canceled check-ups.

“As the stories of our protagonists show, SM is an unpredictable and complex pathology that affects both the physical and emotional well-being of the person“, underlines Marinella Clerico, head of Ssd specialist neurological pathologies, Aou San Luigi Gonzaga and associate professor of the Department of Clinical and Biological Sciences at the University of Turin.” The therapeutic approach must therefore be holistic and multidisciplinary and include both continuous recruitment of pharmacological treatments, but also a personalized rehabilitation path thanks to the involvement of different health professionals (physiatrist, neurologist, physiotherapist, occupational therapist, speech therapist, nurse, psychologist, social worker, urologist, sexologist, neuropsychologist, ophthalmologist), each specialized in their own scope of””.

“Multiple sclerosis is certainly a formidable adversary, whose moves are difficult to predict and this year we have had to deal with it while also facing another emergency, that of the pandemic. What we have been through and are facing will have a price, but we want to continue to fight for a world without MS. Today we cannot beat it completely yet but, thanks to the treatments, research and help that can come from their family and social unit, people with MS can manage to maintain or regain a good quality of life with an expectation not far from those who are not affected by this disease “, comments Francesco Vacca, national president of Aism. With this campaign “we want to celebrate the victories achieved by people with SM, people who are extraordinary in their normality and can be an example for many others, especially for young people who risk isolating themselves and not reacting to the disease”.

“The fact that MS affects a large number of young people and that it progressively leads to physical and cognitive disabilities means that it can be considered a real health emergency: in addition to affecting the overall health of patients, it interferes with school education , professional life, social life and impacts on the autonomy of the individual, a fragile person who needs extensive assistance “, concludes Gioacchino Tedeschi, president of Sin. “The Covid-19 emergency overlapped the multiple sclerosis emergency. Today we hope – he concludes – that, as the discovery of vaccines is helping us to emerge from the pandemic, in the same way scientific research on multiple sclerosis will take further steps forward “.