I am approximately 137 thousand Italians who suffer from multiple sclerosis, a neurodegenerative disease that affects the central nervous system. The numbers are growing, particularly among the female population. The disease is characterized by an anomalous reaction of the immune defenses which attack some components of the central nervous system mistaking them for foreign agents, which is why it is included among the pathologies autoimmune. As the website explainsAismL'Italian Multiple Sclerosis Association «Thanks to treatments and research advances, people with multiple sclerosis can maintain a good quality of life with an expectation not far from those who do not receive this diagnosis.”
«My greeting card» is the name of the initiative at the center of the tenth edition of I don't freak outthe now historic information and awareness project developed by Biogen and from Onda Foundationthe national observatory on women's and gender health, in collaboration with theAism and with the patronage of Italian neurology society. Until June 3rd it will be possible to participate and follow the initiative both on the website www.iononsclero.it than on the page Facebook @IoNonSclerowhere over 79 thousand people share life experiences with multiple sclerosis every day, shedding further light on the true face of this pathology. The initiative will lead to the selection of three «greeting cards» more representative and intense, whose authors will be named ambassador of the numerous online community and will become its spokespersons in a series of information activities.
A large digital support and sharing network dedicated to multiple sclerosis, which in 10 years has grown and evolved, hand in hand with changes in the management of the disease: «The tenth birthday of I don't freak out offers us the opportunity to look back at the path that has been taken and understand its impact on the lives of people with multiple sclerosis – he explains Francesco Vaccanational president of Aism – today, thanks to the progress of scientific research, it is possible in many cases keep the disease under control and people with multiple sclerosis can maintain a good quality of life in most cases, with an expectation not far from those who do not receive this diagnosis. Not only that, in these 10 years important progress has also been made on the data front rights of people with multiple sclerosis and in the approach to managing the disease, from an ever-increasing perspective customization. I am thinking, for example, of the desire for motherhood and pregnancy, which today are generally encouraged and supported among women with multiple sclerosis. Looking to the future, we know that much still needs to be done to improve the lives of those facing multiple sclerosis, with positive consequences for society as a whole”.
Steps forward and future challenges that are reflected in the many testimonies shared in the digital spaces of I don't freak out, which provide an authentic snapshot of the current reality of multiple sclerosis: a young and increasingly female disease. The latest findings highlighted in Aism's 2023 Multiple Sclerosis Barometer confirm that among the new cases there is an average ratio of two women for every man affected by the disease. A scenario that we also find in the community I don't freak outcomposed mainly of women (86%) and a continuously growing attention.
«The personal and professional path of women is dotted with projects and objectives that a diagnosis of multiple sclerosis risks collapsing, but which today more and more women with multiple sclerosis continue to achieve, going beyond the obstacles posed by the disease – she comments Francesca Merzagorapresident Onda Foundation – the many stories we have collected in these 10 years of I don't freak out they demonstrate it and offer a 360-degree story of this very complex disease, putting life in the foreground. Our commitment is to continue to support this extraordinary community of women and men, giving space to their desire to tell their stories and underlining the importance of sharing and mutual support. At the same time, we are convinced of the need to generate information and awareness at a social level, so that greater awareness and inclusion can arise from an authentic account of the disease.”
Multiple sclerosis (MS) can begin at any age in life, but is most commonly diagnosed in young adults between 20 and 40 years old. The estimated people with multiple sclerosis in the world are approximately 2.8 million, of which 1.2 in Europe and approximately 137 thousand in Italy. The pathology is more widespread in areas far from the equator with a temperate climate, in particular Northern Europe, the United States, New Zealand and South Australia.
On the contrary, the prevalence of the disease appears to progressively reduce as one approaches the equator. «Io non sclero has been alongside people with multiple sclerosis for ten years. We started from scratch, with the belief that we could create a free space, available to those facing this complex neurological disease, to share experiences and talk about themselves in an authentic way – he explains Giuseppe BanfiCEO of Biogen Italy – the community of I don't freak out it shows us every day the importance of this project and makes us increasingly proud and grateful to be part of it. We have been engaged in the search for therapies for the treatment of multiple sclerosis for years and have actively contributed to many of the significant steps that have been taken in the management of this disease. We are fully convinced that our commitment must go beyond the therapeutic field to respond 360 degrees to the needs of people who face multiple sclerosis every day. I don't freak out it is an extraordinary example of the importance of this commitment.”
Me, Stefano and multiple sclerosis: what the reports don't say
Source: Vanity Fair

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