Sponsored by Aism, the initiative aims to encourage a dialogue in harmony between people with multiple sclerosis and neurologists to learn more about the symptoms of the disease
Music is the metaphorical instrument chosen to give voice to
multiple sclerosis. In its function as a universal language that unites and becomes the spokesperson for important messages, music (and more particularly sound) is at the center of the information and awareness campaign “Sintomizziamoci” sponsored byItalian Multiple Sclerosis Association (Aism) with the aim of attuning patients and doctors to needs and symptoms so that a dialogue is established in harmony. Given that less than 20% of the symptoms experienced are reported to doctors, the campaign aims to improve the quality of life of people with MS by giving voice to silent symptoms. .
The two channels
The campaign will be broadcast through two parallel channels: digital and physical. The world of social networks, and in particular Instagram, with the dedicated page “Sintomizziamoci” (https://www.instagram.com/sintomizziamoci/), it will be the privileged place to animate its contents through informative posts on symptoms, related sounds, testimonies of people with SM and scientific video pills. While the Multiple Sclerosis Centers, widely present on the national territory, starting from the beginning of June, will be the ideal partners to convey information on MS with clear and “tuned” information content between the general population and neurological specialists.
The research-intervention laboratory
For the pursuit of the objectives of the campaign, which makes use of the unconditional contribution of Almirall, and the realization of its contents Six people with multiple sclerosis, four women and two men, were involved in an intervention-research laboratory. Led by a complexity expert in the therapeutic field for the management of pathologies, they told their story, their experience in the relationship with the neurologist, they described symptoms and emotions. With the help of Chicco Santullimusician and sound engineer, have simultaneously taken part in an experiment in synaesthesia, that is, in sensory contamination.
“Stimulated by specific sound effects that I made ad hoc – explains Chicco Santulli – the people involved in the project tried to metaphorically represent the symptoms of the disease to help decode them. Feelings, fears, emotions, doubts, questions, discoveries is the mix of information collected to generate a vocabulary – common and shared – based on sound support ». Tiredness, fatigue, paraesthesia, numbness, tingling, slowness, energy, shocks, memory, pain, listening, pleasure, motor difficulties, lack of balance, falling and many other expressions that have emerged and translated into sounds. Terms that not only speak of symptoms, but also of needs that are often misunderstood or unheeded. What this vocabulary claims to help achieve with the help of sounds is to translate experiences and thus generate greater care and therefore a concrete improvement in the well-being of patients with MS.
A new doctor-patient relationship
The opportunity that clinicians can also look at the person as well as at the pathology on the one hand and have patients more aware of symptoms and pathology on the other, are the two focuses that emerged during the laboratory. In summary, we need a new doctor-patient relationship and a new communicative register.
The prof. Giacomo Lusneurologist in charge of the MS Studies Center at the Second University of Naples, stating that “the doctor-patient communicative relationship is a critical element, as a flow of experiences and influences mediated by gestures and verbalization, managed by personality and contaminated by pathos. Empathy, sympathy, antipathy are important elements of the communicative flow. The doctor is intended as a coach who must know the person with SM well as well as the person must know the characteristics of their coach well. This will be possible only by communicating ». The sounds in this case are the metaphorical tool thanks to which to be able to know and know each other, to be able to express what one cannot say in words.
Music as a facilitator
“Let’s get together” aims to increase mutual competence / knowledge thanks to which it is more possible to help others. Dr. Luigi Lavorgnaneurologist Aou Luigi Vanvitelli University and coordinator of the digital group of the Italian Society of Neurology, recognizes this strategic function of sound by stating that: «Music is a facilitator of the expression of the symptoms of SM. Music can help translate your discomfort to better express your symptoms. Translating the symptoms into music can harmonize and facilitate the life of patients with MS and their contact with the doctor so that the disease can take shape in a universe that is a little more personal and intimate, with a greater possibility of cure ». Most patients report that when they leave the clinic they reported less than 20% of the symptoms they experienced.
Put the patient at ease
Putting the patient at ease and giving him more time to express his problems is important for the doctor to understand the evolution of the disease. It highlighted the prof. Massimiliano Calabrese, specialist in Neurology, associate professor of Neurology (University of Verona). researcher expert in multiple sclerosis and other autoimmune diseases of the central nervous system, who adds: “Patient reported outcomes (Pro) are crucial for early identification of progressing patients. Only if the complaints are well understood can one understand the response to therapy, the stability or evolution of the disease, thus identifying patients whose symptoms are likely to worsen at an early stage. The so-called silent progression, independent of relapses, the most fearful one that does not respond to therapies, is today very difficult to intercept. Adequate communication with the patient is essential to decode those subtle signals that can direct the neurologist towards an adequate localization of the pathology “.
Visiting time and quality time
Medicine develops increasingly sophisticated and sensitive methods for measuring the effect of treatments on symptoms and disease progression, but ultimately no one like the patient can assess the impact of these on his life. Attributing a sound to the symptoms, which the patient otherwise would not have been able to report, goes in this direction and facilitates doctor-patient communication.
“If, thanks to effective and safe immunomodulatory and immunosuppressive therapies, clinical practice has improved, the road is still uphill on the doctor-patient interaction”, he underlines the professor. Diego Centonze, specialist in Neurology and Psychiatry, full professor of Neurology at the University of Rome Tor Vergata and director of the UOC of Neurology and of the Stroke Unit at Irccs Neuromed, in Pozzilli (Isernia): “The visit times ranging from 20 to 30 minutes often hardly allow patients to be satisfied in listening to the symptoms felt, starting from the previous visit which dates back to 4 or 5 months earlier. In fact, people require quality time, during which doctors, rather than paying attention only to the biological aspects of the disease (results of sampling, resonances, etc.), also and above all dedicate themselves to the person as a whole “.
Multiple sclerosis mostly affects young people between the ages of 20 and 30
. There are also many cases of pediatric SM. 10% of the population with MS is under 18 years of age. The doctor and patient relationship is fundamental as it is essential to communicate those invisible symptoms that are often misunderstood and do not help to give a timely diagnosis. of multiple sclerosis which, taken early, slows the progression of the disease and sometimes allows us not to reach a serious disability “he declares Francesco Vacca, national president of Aism. Aism, together with its Foundation (Fism) is the only one organization in our country that has been intervening at 360 degrees on multiple sclerosis for over 50 yearsdirecting, supporting and promoting scientific research, helping to increase knowledge of multiple sclerosis and the needs of people with MS by promoting services and treatments necessary to ensure a better quality of life and affirming their rights.
May 24, 2022 (change May 24, 2022 | 12:13)
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