Multiple sclerosis: a project to get to know and tell the story of the people behind the disease

Francesca Merzagora, Nicoletta Orthmann, Federica Rossi

Onda, Italian national observatory on female and gender health, Milan, Italy.

In the field of neurodegenerative diseases, multiple sclerosis represents a paradigm of gender-specific medicine. Gender differences characterize, in fact, all aspects of the pathology, from its incidence to its clinical course, from prognosis to response to the different treatment options. If women are much more disadvantaged in terms of susceptibility (the ratio of women to men is 2 : 1 and the disease is increasing among women), on the other hand, among the female population benign forms prevail and any aggressive forms more frequently show a better clinical course, with the prevalence of inflammatory lesions rather than neurodegenerative ones showing on magnetic resonance imaging.

Clinical pictures and an expression of the progressive destruction of myelin sheaths used to transmit nerve impulses are characterized by wide variability in terms of neurological manifestations and progression. For most patients, the expression of the disease with the greatest impact is the limitation of movement due to muscle weakness, fatigue, poor coordination, rigidity and balance deficits, which generally evolve into conditions of persistent disability and increasing progression.

Multiple sclerosis does not reduce life expectancy compared to the general population, but has a significant impact on the quality of life of those affected and their loved ones. Moreover, the disease begins at a young age, generally between 20 and 40 years, and therefore in the most productive period of life, when personal and professional projects are taking shape.

The IO NON SCLERO project, developed by Biogen and Onda in collaboration with AISM (Italian Multiple Sclerosis Association) and under the patronage of SIN (Italian Society of Neurology), was born four years ago in Autumn 2014 with the aim of giving voice to people patients and families to reveal the authentic face of multiple sclerosis, telling the story of the disease through projects and testimonies of those who face it every day, with courage, optimism and determination. When the project was conceived, patients themselves, online, in blogs, forums and on social media, were referring to one another as sclerati: hence the title of the project, which was associated with the claim “stories of projects and dreams that do not stop with multiple sclerosis”.

The heart of the IO NON SCLERO community is a very active Facebook page: about 77,000 fans, 87% of whom are women; it is a real open space for sharing experiences, and there is also a website and an app containing general information about the disease and all the stories and testimonies collected over the years.

The project began with a web series, an online fiction divided into six episodes that put the spotlight on the disease, told in a simple and concrete way through the life of an ‘ordinary’ thirty-year-old woman who has to manage everyday life after receiving the diagnosis. The series, which was also the subject of an awareness campaign in cinemas, was awarded at the Rome Web Awards 2015.

The fiction was used to tell the story of real life, offering its community of followers an online initiative focused on rewarding a project that aimed to improve the quality of life of patients and their families.

Some of the authors of the projects have become the protagonists of a real-life series, a journey around Italy in seven episodes. The stories have been gathered in a book in which the voice of patients and their families is joined by that of institutions and the scientific community.

In 2016, an online call to action called for the collection of video messages and photos, to give a face to the IO NON SCLERO community that in the meantime had grown and proved to be particularly active. 2017 was the decisive year for involvement and participation. An initiative was launched to share the story of turning points; the moment when people realized that multiple sclerosis would not prevail over their life plans. Matteo Caccia, storytelling expert and radio presenter, helped the IO NON SCLERO community to write their testimony through online video-tutorials. Among the more than 80 stories published on the site, 12 were chosen to be transformed into art tableaus starring in the travelling exhibition that toured six Italian hospitals and are included as illustrations in the IO NON SCLERO 2018 diary distributed for free in book shops.

The latest initiative born this year, ‘IL MIO GRAZIE’ (MY THANK YOU), invites patients to give ‘thanks’ to the people and things that are important for them to deal with the disease. From the more than 200 messages that have been sent from the site and the app, 8 have been selected to be illustrated and will become an advertising campaign of billboards in different cities throughout Italy and adverts in newspapers and magazines with the aim of increasing awareness of this disease.

The sharing of stories and experiences is the engine that feeds the IO NON SCLERO community and women are the main drivers, in their dual role as people with multiple sclerosis and caregivers, with more than 83% participation in the various initiatives launched since 2016. This is not surprising: in general, women are more likely than men to use social media to share emotions and personal experiences.

IO NON SCLERO has opened a virtual space, which sometimes also becomes physical, where patients and caregivers can tell their stories and be encouraged by those of others who fight on the front line against multiple sclerosis, shifting the focus from disease to people.

The power of storytelling and sharing has proved extremely effective in telling the human side of the disease, well represented by stories of courage and great willingness to imagine a ‘rich’ life despite the diagnosis of a chronic disease such as multiple sclerosis. The experience of storytelling and sharing helps patients to elaborate their experiences of illness and give them meaning, processes that are fundamental to better address the course of treatment.

The project has been a great success thanks to patients and family members who share their life stories: positive testimonies that excite and leave their mark for everyone who is part of the rich world that is the IO NON SCLERO community.