Multiple sclerosis day, the pandemic seen through the eyes of those with fewer defenses: “I am afraid of the selfishness of those who do not wear a mask”. “So many prejudices about us, I can’t find a job”


They have been locked in the house for weeks because of the lockdown and now, between fears and worries, they are gradually trying to return to normal. They are young people with a chronic pathology of the central nervous system that is diagnosed in particular to women (the ratio is 2 to 1 compared to men) and at the moment there is no cure to defeat it. Eleonora, Cinzia is Mary they have the Multiple sclerosis (Sm) and they are facing phase 2 with some concern. contacted them to tell us how they are experiencing the pandemic in their condition of immuno-depression. “Because of Covid-19 everything has changed and now I’m afraid of being infected because I am a weaker subject in terms of immune defenses“Says Cinzia. “I had to stop the rehabilitation sessions because they temporarily closed the center where I was going, I hope it will be reopened in total safety as soon as possible. In addition, in two months I have not received any masks at home and I felt abandoned, “says Maria. “I started the quarantine a strong bewilderment, a negative feeling similar to when I received the diagnosis of Sm, “says Eleonora. However, the three women also talk about the “precious support” received by their reference organization. During the pandemic theItalian Multiple Sclerosis Association (AISM) has never stopped supporting its members, even through the toll-free number 800 803 028. And today 30 May celebrates the World Multiple Sclerosis Day, organizing direct and online discussions with the institutions and stakeholders relaunched online with the hashtag # insiemepiùforti. Together stronger is the motto of the AISM campaign activated for the Covid-19 emergency, together with that of the international campaign #MSconncetion. Here are the stories of three young people with SM during the Sars-Cov-2 pandemic.

From work to the costs of medicines, the battles of the AISM – In Italy there are at least 122 thousand people with multiple Scleorosis and, while diagnoses increase, the AISM is fighting in the front line against prejudices and discrimination especially at work. “There are more and more diagnosed cases, about 3,400 new ones per year and 50% of these are young people between the ages of 20 and 25, “explains the AISM president Francesco Vacca. The problems encountered during the emergency are different, “people with MS are affected twice by the health and social crisis triggered by the coronavirus, due to the immune system fragility, they must adopt even more caution, for them the essential responses of care, assistance and support have failed in too many cases ”. After the peak of the pandemic, the gradual return to normal is worrying now. That for those with multiple sclerosis it risks being even slower. Even before the emergency, the AISM asked, among other things: Diagnostic Therapeutic Assistance Plans (PDTA) homogeneous throughout Italy, costs for lower medicines is the right to rehabilitation. And help to facilitate access to the professional world: “We have found too many still discrimination on jobs. What is needed most of all is work as a right especially for young people with MS, because there are still prejudices in the search for employment for people who have this pathology. Many symptoms are invisible: Chronic fatigue is our life partner, we get up in the morning already very tired, many are unable to keep the eight hours of work in the office “. And, he concluded: “The barriers in Italy are not only the architectural ones, but above all the cultural ones. Therefore we must increase our ability to raise awareness of MS and make it clear that this disease does not make you the appendix of the company, but you remain an integral part of it. ”

Maria Alessi: “I am without rehabilitation and I have never received PDI despite being a subject at high risk of suffering the infection” – He received the diagnosis of Sm when he was eighteen and chose to enroll in Law some time ago. Maria Alessi is 34 years old and works in the Aism Palermo section inclusion of young people. “I got married to a person who immediately accepted to face the battle of my illness by standing next to me. During the quarantine I had wonderful news, that of pregnancy, which came after many sacrifices due to the relapses of the disease and the drugs that I had to change. I am very enthusiastic but also so scared for the extremely uncertain situation that my son will experience, “says Maria. She does not deny that it was “very difficult to remain locked up in the house for many days”, trying to deal with whatever came to mind and managing to take some tests. “I think about how I can do to protect my baby from this virus but also to when I can resume rehabilitation because the structure where I was going was closed due to the provisions on Covid-19 “. Maria complains that “there has been no adjustment by the center to a different rehabilitation, for example via the internet, at least for people who do active physiotherapy like me”. Sometimes he always leaves home using the Dpi but “there is still a lot of fear, in the rare times I go out, I look around and I seem to see a new world, I have dizziness, a sense of nausea, what used to be ‘normal’ before, now everything looks different “.

Cinzia Ogu: “The pandemic has turned my university life off-site. I’m also worried about not being able to find work in the coming months “ – He lives in Genoa, is 29 years old and studies Communication Sciences in Savona. “At the beginning I experienced the lockdown with the suspension of the lessons. Life went on, let’s say normally, and I took it as a short vacation indoors. Then everything got worse, the weeks of detention increased and the world literally imploded “explains Cinzia Ogu. “The more I listened to the news and the numerous columns dedicated to the topic, the more I was afraid especially of my illness.” How to react? “There was nothing I could do,” says Cinzia, “inactivity has never been on my mind, so I decided to divide the day between training, studying, cooking and hours of video calls with friends. I wasn’t always constant, but I tried to create a routine in order to find a balance. ” In the quarantine months he received home only 2 masks from the Civil Protection but four people live with her. “Fortunately I saw the continuity of my rehabilitation guaranteed in the AISM national center based in Genoa, and I make the days of therapy coincide with the moments when I go out to do the shopping, because I am still afraid and I try to go out as little as possible and always with mask and gloves. Moving on a scooter – he adds – is something that makes me think about normalcy. These days I see more people around but I still feel on the edge. ” Cinzia says she is confident to a certain extent: “I wish I had more hope for the future, but I’m worried because I can’t find work.”

Eleonora Boni: “With the lockdown I felt as lost as when I was diagnosed with multiple sclerosis” – He has a master’s degree in translation and works in the marketing sector, as well as being a blogger of Eleonora Boni, 26, does not stop in front of the difficulties of his illness and has started to attend a master’s degree at the LUISS Business School. “Being aware of being a subject with a high risk of contagion is not pleasant and for a certain period of time I have seen certainty consolidated over the years, experiencing moments of disquiet about what could happen to me,” he says. It is not so much Covid-19 or the pathology itself that frightens her, but the forced change that is upsetting her habits. “During the quarantine I chose never to go shopping and I got help from my parents,” says Eleonora. “This week after a long time I went back to the supermarket and it was strange. While looking for yogurt, you need to be careful not to be too close to others. What pleased me most is the sense of responsibility that I perceived. Then of course – Eleonora continues – I also saw those who still turn without a mask and make me very angry, because in addition to a lack of perception of the seriousness of the situation, I also noticed a good deal of selfishness. And I don’t hide that I was a little afraid. ” Eleonora, who is working in smartworking even before the lockdown by decision of the company, says she is “really worried about the Italian socio-economic situation” and hopes that no new cuts will be made to personal services. “This emergency has shown how fundamental it is to invest more in the national health system and the importance of having a territorial network of care and assistance for chronic and immune-depressed patients,” he concludes.

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