“We expect life to be a perfect straight line, with no shadows. It is not so. One day, darkness. An unexpected curve. And then one more. I understood that this was my path and that darkness is not emptiness: we can continue. As my mum used to say: ‘just think about where you put your feet’”. With these words, Annarita, 49, suffering from multiple sclerosis since she was 23, opened the photographic exhibition “New light on MS. Let’s think about it ”, an initiative in which she is the protagonist together with other people who, at a certain point in their lives, have had to deal with her illness. Ten stories of multiple sclerosis (MS) transformed into evocative portraits by Maurizio Galimberti, photographer, instant artist and pioneer of the photographic mosaic technique, to tell how today it is possible to live free from the disease and regain possession of one’s life. The exhibition, created by Roche in collaboration with AISM (Italian Multiple Sclerosis Association) as part of the campaign from which it takes its name, will open to the public with free admission from Friday 2 to Sunday 11 December 2022, at the MAC – Miradoli Arte Contemporanea gallery in Milan.
Multiple sclerosis, 80% of ocrelizumab-treated patients without signs of disease after two years
by Anna Lisa Bonfranceschi
The right therapy at the right time
In Italy, 133,000 people live with multiple sclerosis – a chronic inflammatory disease that affects the central nervous system – most of whom show the first symptom between the ages of 20 and 40. And it is for this reason the main cause of non-traumatic disabilities in young adults which, without effective therapy, worsen with the progression of the disease. Even mundane actions, such as walking, reading, talking, or grasping an object, can become difficult. “Compared to 20 years ago, today those who receive a diagnosis of MS can no longer count on just two drugs, but on a wide range of medicines and on the possibility of personalizing therapy – he explains Philip Martinelli Boneschi, neurologist at the San Paolo Hospital in Milan and associate professor of neurology at the University of Milan -. The challenge, therefore, that every neurologist is faced with is to identify the right therapy to administer to the right patient at the right time. Acting promptly makes it possible to obtain maximum results and improve the quality of life, above all thanks to treatments that can be administered every six months: a time long enough to allow patients to feel free from the burden of therapy”.
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Diagnosis as the beginning of a journey
For those suffering from a chronic disease such as multiple sclerosis, the diagnosis is therefore only the beginning of a journey that will last a lifetime. “When, several years after the appearance of the symptoms, the diagnosis arrived, I was above all angry – Annarita continues -. I was looking for healing to take back my life, to continue what I was doing. I couldn’t bear the idea that the disease could upset my plans for a future life. Then, little by little, there was a re-elaboration and acceptance of what my path would have been, in which the comparison with specialists and with people who were going through my same experience was fundamental. Then I understood that the diagnosis was not the end, but the beginning of a journey, and that after a bend I could find a long straight”.
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A journey in which therapeutic options are all the more effective the more they are placed within an empathic and constructive doctor-patient relationship. “Faced with a new therapy and the different characteristics of the drugs available – he underlines Laura BrambillaLevel I Medical Director, Neurologist at the C. Besta Neurological Institute – the neurologist must also consider the patients’ expectations, their wishes and their needs, and thus arrive at a global management”.
From stories to portraits
The ten portraits were born from reflections made during a listening workshop by people affected by MS and by specialists, on the topics of diagnosis, the patient-doctor relationship and how today it is possible to live with the disease by leading a normal life. A set of emotions, expectations and difficulties with multiple facets, told by Maurice Galimberti through the photographic mosaic technique. “Each image has been broken down into many snapshots, each of which reproduces a different detail of the same subject. The different Polaroids were then placed side by side to recompose the image in a collage – explains the photographer – I worked on this project with the spirit of the ‘stinging mosquito’, so dear to Henri Cartier-Bresson: basically , I displaced my subjects through their immobility, because more than a simple expression, I wanted to grasp the inner silence”. All the images on display are accompanied by very short sentences, small reflections elaborated by the protagonists of the portraits to support those who find themselves living with the disease.
A “barcode” to follow the evolution of multiple sclerosis
by Dario Rubino
Campaign goals
“It is essential that the disease be told by the people who live with it, because it is from their experiences that those who have recently received a diagnosis can understand what the different opportunities are available today – he concludes Francesco Vacca, National President of AISM – The journey is certainly not easy and life projects can undergo slowdowns and re-adjustments, which involve not only people with MS, but also their families. Hence the importance of initiatives like this, which manage to shed light on the different nuances of the disease”.