Introducing narcolepsy to the sound of rap music. Thus the #CreateforSleep campaign, in its second edition, has chosen to talk to young people about a rare disease, which causes sudden sleep attacks, prevents those affected from living a normal life and often manifests itself in childhood or pubertal, taking years, even decades, before being diagnosed. To hit the mark, AIN (Italian Association of Narcoleptics and Ipersonni), which created the campaign with the patronage of AIMS (Italian Association of Sleep Medicine), asked the rapper and songwriter for help. Murubutu, born Alessio Mariani, professor of history and philosophy, pioneer of that musical genre known as literaturap, a didactic rap that takes inspiration from literature and philosophy. He was born of it With closed eyesan unreleased song (feat. Elisa Aramonte), available on Spotify and Youtube, which tells about the discomforts, fears and feelings of those who live with this disease. The campaign, which also saw the participation of patients who shared their experiences on the AIN social networks, aims to help those who might be in the same condition, to understand what the symptoms of the disease are and how they manifest themselves, to recognize them as soon as possible .
Difficult to regulate the sleep-wake rhythm
Narcolepsy is a neurological disease triggered by an incorrect response of the immune system, which attacks the cells from which orexin, a protein responsible for regulating the alternation between sleep and wakefulness, is produced. The discovery of this mechanism has led to the development of therapies capable of relieving the symptoms of the disease, and led to the two scientists who identified it – Emmanuel Mignot e Masashi Yanagisawa – one of the Breakthrough Prize 2023, the prizes paid each year to the most innovative scientific works. Precisely this difficulty in regulating the sleep-wake rhythm in a physiological way causes in those who suffer from it a strong drowsiness during the day and sudden and atypical REM phases. But diagnosing it is not so simple: of the 6 thousand people with narcolepsy estimated in Italy, those with a certain diagnosis are only 2 thousand. In fact, narcolepsy is often mistaken for epilepsy, psychiatric diseases, but also “simple” listlessness or fatigue, as he says Giuseppe PlazziHead of the Narcolepsy Center of the Department of Biomedical and Neuromotor Sciences, UOC Neurological Clinic, Bellaria Hospital and Past-President of AIMS
“In its most typical form, this rare sleep disorder can manifest itself as excessive daytime sleepiness and cataplexy, that is, a sudden loss of muscle tone caused by positive emotions, such as laughter, often accompanied by hallucinations, sleep paralysis and sleep. altered nocturnal. Precisely these symptoms represent the alarm bells, which we have identified as Red Flags in a scientific publication, and are often confused with symptoms of other pathologies or with manifestations of fatigue, or even the listlessness of the child or adolescent who suffers from them ” .
How narcolepsy is treated
The available therapy aims to control or eliminate these symptoms, and includes not only pharmacological treatments but also some behavioral approaches: for example, naps of 15-20 minutes at times of the day when sleepiness occurs more often and from which the patient wakes up more rested and able to stay awake for a few hours, after which he will have to resort to a new short sleep.
All (unknown) symptoms of narcolepsy
by Valentina Guglielmo
The importance of recognizing the warning signs
It is easy to imagine the impact of the disease on quality of life, especially when it arises in childhood and years pass before a precise diagnosis is made. “I myself began to show the first signs at 8 years old, but to receive the diagnosis at 21 – he comments Massimo Zenti, President AIN – This delay has caused many fears and discomforts to arise in me, which I could have avoided if only I had received an early diagnosis. For this reason it is so important to raise awareness among the younger generations ”.
Countryside
To inspire Murubutu in the writing of his single were the testimonies and stories of courage, strength and resilience of patients and caregivers who in recent months have participated in the call to action addressed to the AIN social communities. In his piece, Murubutu tells the story of narcolepsy through the story of Fabio, an imaginary character who lives on his skin the experience of the disease, the derision suffered, the will to react and the satisfaction of having found a job or being able to train a family thanks to a correct diagnosis and an adequate therapeutic path.
“When I was asked to write a new unpublished work on narcolepsy, I’m honest, I was hesitant because I didn’t have a precise idea of what it was – explains Murubutu – In the past I had already dedicated some passages to pathologies or disabilities, but to study and tell the story of a patient suffering from this sleep disorder has made me enter a new world, that of rare diseases. Reading the stories and stories of patients, I realized how disabling, especially from an emotional point of view, unknown and apparently invisible pathologies, such as narcolepsy, can be. I therefore decided to develop a song that could convey to those who listen to it the strong sense of misunderstanding and inadequacy that narcoleptics often feel. Talking to young people today is not easy – concludes the artist – but thanks to my profession as a teacher I have the opportunity to be in close contact with them and to get closer to their sensitivity. I therefore hope that “With your eyes closed” can really give concrete support to the campaign ”.