The multiple sclerosis it must not prevent those affected by it from doing what is most important to them, from realizing their dreams and reaching their goals. A warning that today, a year and a half after the start of the pandemic from Covid-19, is even stronger and must push those living with the disease to never give up and continue their treatment path.
It is the fil rouge that links the seven stories at the center of the Campaign Check mate. Bold stories of people with multiple sclerosis, made by Novartis Italy in partnership with AISM – 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 theCovid-19 emergency, as a reason for stopping, 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 come true, 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/scacco-matto
Personal experiences that tell how, with determination and with the right support, it is possible to take back those spaces that are imagined lost due to the disease and the limits imposed by the lockdown, scoring one’s winning move, the checkmate, which puts the corner there multiple sclerosis.
“The chess metaphor well represents the game that a person has to play against MS from the moment of diagnosis: how the most difficult chess games they are won thanks to a good strategy of attack and defense, mixed with a great ability to adapt, in the same way in the difficult game against MS you need courage and determination, a relationship of trust with your doctor, the support of loved ones – comments Dr. Luigi Lavorgna Neurologist AOU “Luigi Vanvitelli” University, Chair of the “Digital” Study Group of the Italian Society of Neurology – It is thanks to them that the pieces on the chessboard (therapy, rehabilitation, support, work, hobbies, etc. .) can move by predicting and blocking the opponent’s moves, thus bringing the player closer to victory. “
The stories of Check mate they touch on all aspects of life, from the professional one to the most intimate and personal one, such as parenting, and tell about all the areas in which MS often represents a limit. This apparently unbeatable opponent in the last year was also joined by the health emergency from Covid-19: according to the AISM Barometer (the reference document for knowing in depth the reality of the disease) among the most serious effects of the pandemic c ‘is definitely the psychological impact.
In fact, a widespread lack of distance psychological assistance was combined with situations of strong social isolation, anxiety and depression, both for people with MS and for their caregivers, who 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.
According to a survey conducted by AISM, the most impacted areas of life for people with MS include – in addition to the topic of health and rehabilitation – quality and lifestyle (for 54% of respondents), social and emotional life (for 51%), mood (39%).
“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 – declares the Professor Claudio Gasperini – Coordinator of the Multiple Sclerosis Study Group of the Italian Society of Neurology – This allows us on the one hand to diagnose the onset of the disease earlier and to monitor its progress, 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 for 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-postponable health services: 88% of MS Centers postponed or canceled check-ups.
“As the stories of our protagonists show, MS is an unpredictable and complex disease that affects both the physical and emotional well-being of the person – says Professor Marinella Clerico – Head of SSD Specialized Neurological Pathologies, AOU San Luigi Gonzaga and Associate Professor of the Department of Clinical and Biological Sciences UniTo – The therapeutic approach must therefore be holistic and multidisciplinary and include both the continuous intake of pharmacological treatments, but also a personalized path of rehabilitation 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 field of application “.
“Multiple sclerosis is certainly a formidable adversary, all of which is difficult to predict and this year we have had to face it by facing another emergency, that of the pandemic that has hit our country and the whole world. What we have been through and are facing will come at a price, but we want to keep fighting for a world without MS. Today we still cannot beat it completely 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 who is not affected by this pathology – comments Francesco Vacca, National President of AISM – Italian Multiple Sclerosis Association – With Check mate. Bold stories of people with multiple sclerosis we want to celebrate the victories achieved by people with MS, real people, 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 strikes a large number of young people and that progressively leads to physical and cognitive disability means that it can be considered a real health emergency: in addition to affecting the overall health status of patients, it interferes with school education, professional and social life and impacts on autonomy of the individual, a fragile person who needs extensive assistance – concludes the Prof. Gioacchino Tedeschi President of SIN – Italian Society of Neurology – The COVID-19 pandemic has undoubtedly complicated the lives of patients who have experienced difficulties in accessing the treatments and services to which they are entitled in the last year. The Covid-19 emergency overlapped with the multiple sclerosis emergency. Today we hope that, just as the discovery of vaccines is helping us emerge from the pandemic, so too will scientific research on multiple sclerosis take further steps. “