by Health Editorial Staff
It is estimated that around six thousand Italians suffer from it, but to date there are only two thousand patients with a certain diagnosis. The importance of early diagnosis to initiate timely treatment. In Bologna miniatures that tell the story of the disease
It is estimated that around six thousand Italians suffer from it but to date there are only two thousand patients with a certain diagnosis. Those who suffer from narcolepsy experience pathological drowsiness during the day or real irrepressible attacks of sleep, while at night they experience a phase shift in the alternation between the REM and non-REM stages of sleep, which no longer has the normal restorative effect. To raise awareness of this condition characterized by the brain’s inability to correctly regulate the alternation between sleep and wakefulness, on the occasion of World Narcolepsy Day, theItalian Association of Narcoleptics and Hypersomniacs launched the third edition of the #CreateforsleepKIDS 2023 awareness campaign, sponsored by the Municipality of Bologna, the Local Health Authority of Bologna, the IRCCS Institute of Neurological Sciences of Bologna, the Italian Federation of Pediatricians, the Italian Association of Sleep Medicine and Bimbo Tu, created thanks to the unconditional contribution from Bioprojet.
The disease and how to recognize the symptoms in the child
Professor Giuseppe Plazzi, director of the Sleep Center of the IRCCS-Institute of Neurological Sciences of Bologna and of the school of child neuropsychiatry of Modena and Reggio Emilia, as well as president of the European Narcolepsy Network, explains: «The aspect on which, even today, it is necessary to turn the spotlight on the early and correct diagnosis of narcolepsy because its symptoms are often confused with other pathologies such as epilepsy or some psychiatric diseases -. The delay in diagnosis can exceed 10 years, thus leading to a consequent delay in the administration of therapies. Pediatric symptoms are characteristic and can be recognized; it should be noted if these occur together and continuously. Excessive daytime sleepiness manifests itself through “sleep attacks”, i.e. episodes in which the child falls asleep in circumstances that are not usual for rest. Another important symptom is cataplexy, which manifests itself with brief losses of muscular control caused by emotions such as laughter or excitement, and which in children also manifests itself with the phenomenon of “cataplectic facies” in which there are half-closed eyelids, mouth open and protrusion of the tongue – continues the expert -. If endocrinological and metabolic signs are also present – such as precocious puberty or sudden and rapid increase in body weight leading to obesity – these symptoms, together, can be an alarm bell for further diagnostic work-up. Other signs and symptoms are hallucinations, sleep paralysis, inability to move for short periods after waking up or before falling asleep, and a disturbed night’s sleep, characterized by agitation and frequent interruptions in sleep.”
The boys are not “lazy”
«Narcolepsy is a rare disease, poorly known, but controllable, which can have a very important impact on the quality of life of those who suffer from it – says Massimo Zenti, president of the Italian Association of Narcoleptics and Hypersomniacs –. Often in childhood and adolescence, people who do not know they are affected are branded as “lazy”, thus exacerbating fears and discomfort in patients. Our association wants to raise awareness of the disease, starting with the little ones, underlining how important it is to recognize the warning signs early. I am convinced that this campaign can help an affected, or potentially affected, person to recognize themselves in the symptoms.”
The campaign and the artists involved
The #createforsleepKIDS campaign through art, in this case street art, becomes an effective vehicle for information and knowledge of unknown or underestimated symptoms. This year, narcolepsy is told with the help of two artists who have interpreted the pediatric Red Flags, i.e. the symptoms and alarm bells characteristic of the little ones, through miniature characters.
The historic collaboration that binds Silver (Guido Silvestri, father of the iconic Lupo Alberto) to the Association is revived with new life through the eclecticism of the young Tuscan artist Claudiano.jpg; each character created by the artist duo awaits parents and children on the streets of Bologna to help them discover the main symptoms of narcolepsy, via a QR code placed on each sticker. The works will also be exhibited in two exceptional locations: Palazzo Fava Marescotti and the Bellaria Carlo Alberto Pizzardi Hospital – AUSL Bologna, a city chosen precisely because it hosts the center of excellence in the treatment of narcolepsy in Italy.
September 22, 2023 (modified September 22, 2023 | 2.14 pm)
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