• Fri. Jan 28th, 2022

Checkmate, the ‘bold’ stories of multiple sclerosis patients

Byeditorial

Jun 1, 2021

“I was 9 when my mother noticed that I wasn’t smiling normally. From that moment on, an ordeal made up of examinations and visits to different centers began, until a neurologist communicated the diagnosis to my mother: Multiple Sclerosis. I, however, years later from the internet I learned that people like me ended up in a wheelchair. I dropped out of school and isolated myself from everything and everyone. The world had collapsed on me. But again thanks to the network I discovered that I am not alone and that, despite the illness, I can have an active life. Today I have a job, I drive a car and I am a volunteer in the Bari section of the Italian Multiple Sclerosis Association which helped me find the strength and determination to face and accept the disease. I must not be ashamed, it is not my fault that I have multiple sclerosis ”. Valentina, 22, a job as a saleswoman in a children’s clothing store in the historic center of Monopoli and a secret dream, becoming a cake designer, is just one of the “Seven Bold Stories of People with Multiple Sclerosis” – told through video – the new portal dedicated to medical-scientific information created by Novartis. 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, because multiple sclerosis must not be allowed to deeply affect one’s existence and that it is possible to “checkmate” the disease. Objective of the initiative: to let people know that it is possible to reach one’s goals despite the disease, as Valentina herself tells to ‘Allies for Health’. Among the stories collected by Scacco Matto, there is also that of Alessio, a lover of travel , for years chief engineer on cruise ships. “For me – says Alessio – it all started in August 2018: one morning I woke up with a tingling sensation on my hand and left arm. I didn’t notice but after four days that tingling spread throughout the body. Worried, I went to the emergency room and from that moment on I started all the tests. The official diagnosis came six months later, in February 2019. Since then my life has changed, for a medical commission I was no longer suitable for my job. I couldn’t believe I had to give up on this dream: thinking about abandoning it was like ‘bumping into a wall’ “. “No more trips at sea for 10 months a year. But – he continues – I didn’t lose heart, on the contrary. So on my motorbike, with a tent, luggage and the bare necessities, I went around Europe, up to the North Cape: in 100 days I crossed 16 countries and covered 20 thousand kilometers. For me that solo trip, organized with my doctor, represented a challenge, afterwards I felt freer and without that weight of multiple sclerosis. That experience changed me; it taught me that traveling is not only possible, even with multiple sclerosis, but it charges you with sensations so positive as to be therapeutic. moto “to continue their journey in life, leaving behind the fear of not making it.” The red thread that binds these stories of redemption is that multiple sclerosis should not be experienced by being hidden, alone, but must be faced openly. The pathology, complex and imp revisable, it has a significant impact on people’s lives. However, it is not a red light. Thanks to treatments and research advances, people with multiple sclerosis can maintain a good quality of life with an expectation not far from those not affected by this disease. The full service is available at: https://www.alleatiperlasalute.it/la-voce-del-paziente/scacco-matto-le-storie-audaci-di-pazienti-con-sclerosi-multipla.

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