The #Createforsleep campaign to foster greater knowledge about the rare, still underdiagnosed sleep disorder. In Italy there are 2000 narcoleptics but an estimated 6000. Here are the red flags to watch out for
Recognize the alarm bells of the narcolessia, rare and chronic d
sleep disturbance the key to early diagnosis. To date, on average, it takes 14 years to know you are narcoleptic, says the president of the Italian association for sleep medicine (Aims) Giuseppe Plazzi, which gives the example of one of his 17-year-old patients, twice rejected, pointed out as lazy, listless, failing to comply. But he was sick. With the aim of spreading greater knowledge about narcolepsy and promoting a quick and correct diagnosis, the awareness campaign was born #CreateforSleep created by Ain (Italian Association of Hypersonal Narcoleptics), with the patronage of Aims (Italian Association of Sleep Medicine), in collaboration with Naba, Nuova Accademia di Belle Arti and with the unconditional support of Bioprojet Italy.
Key point of the campaign (also with a direct Facebook in which patients and specialists discussed the disease) to tell and make known (not only in words, but also with images) the Red Flags of narcolepsy, or the alarm symptoms too often underestimated or even confused by doctors and pediatricians with other neuro-psychiatric problems.
What is narcolepsy
The narcolessia one neurological pathology characterized by an inability of the brain to physiologically regulate the sleep-wake rhythm. Narcoleptic patients enter REM sleep suddenly and atypically abandoning the NREM phase after only 15-20 minutes. It is a chronic disease, difficult to diagnose because it is little known and with symptoms similar to other pathologies. In Italy, for example, it is estimated that there are about 6,000 narcoleptic patients, but those with a certain diagnosis are only 2,000.
Alarm symptoms (Red flags)
But what are these characteristic symptoms in narcolepsy? There are five of them and in the most typical forms they occur concurrently, but not always so, especially in the pediatric age.
Excessive daytime sleepiness: it mainly manifests itself with uncontrollable sleep attacks, but also with marked drowsiness during the day; in pediatric age it can also present with lack of inattention, irritability and hyperactivity.
Cataplessia: sudden loss of generalized or partial muscle tone, caused by emotions, lasting a few seconds or a few minutes and present only in type 1 narcolepsy.
Hypnagogic or hypnopompic hallucinations: vivid visions, often horrifying, which are perceived upon falling asleep or upon awakening.
Sleep paralysis: temporary and short, lasting a few seconds, impediment to move or speak, which occurs when falling asleep or waking up.
Impaired nighttime sleep: fragmentation of sleep with frequent and prolonged awakenings.
The symbol image
Often it is the images that with their colors and shapes best convey the sensations that patients can experience: anguish, fatigue, tension underlines Massimo Zenti, President Ain, also a narcoleptic patient. As part of the # Create for Sleep campaign, a contest which involved the students of the BA in Graphic Design and Art Direction of Naba invited to tell about narcolepsy through the illustration of one or more symptoms. Out of 12 drawings, 5 made it to the final and winner of the contest Anna Bonomi who with his image managed to tell everything to those who know nothing about narcolepsy with the face of a young boy who, while at school has his eyes half closed, tries to resist sleep and surrounded by a floating and liquid atmosphere, which resembles that of a dream.
the difficulties of narcoleptics
And it is precisely at school that the greatest difficulties arise. Students are often branded as lavish and lazy and they find themselves victims of bullies or teachers who do not understand their daily difficulties. Massimo Zenti’s experience emblematic: I suffered from daytime sleepiness since 6 years with terrifying hallucinations and sleep paralysis. My parents took me to a lot of doctors to figure out what I was always with wrong diagnoses. I was getting bad grades in school because I wasn’t able to do what I wanted. At first job they suspect you are a drug addict or even tell me I ate too heavy to justify excessive sleepiness. The diagnosis arrived in 2006 thanks to first commercial with Lupo Alberto which related the symptoms of narcolepsy. I recognized myself and approached the Ain association. The diagnosis changed my life because I was able to have a first therapy with scheduled naps and then a regular drug therapy that finally allowed me to reach a good quality of life.
The wrong diagnoses
Among the incorrect diagnoses that narcoleptics most often receive are those of epilepsy and psychosis, with the consequence that they are treated for years for pathologies from which he does not suffer and with heavy drugs, also with important side effects, underlines Giuseppe Piazzi, who is also head of the Narcolepsy Center of the IRCCS, Institute of Neurological Sciences of Bologna, one of the reference centers in Italy for narcolepsy (list here). And it is precisely in one of these centers that you must turn to if you suspect you suffer from narcolepsy because they specialize in this pathology.
The first step to living with narcolepsy in a serene way is certainly awareness of the disease and adequate behavior in everyday situations. short naps. Naps last from a few minutes to up to an hour, are restorative and allow you to stay in good shape for a few hours, after which the sleepiness reappears. Short naps can vary from one to 6-7 per day, depending on their duration, but above all depending on the patient’s chances of taking them. For those suffering from cataplexy, great help can also come fromsporting activity because cataplexy does not occur during training sessions, adds Plazzi. There pharmacological therapy symptomatic, that is, it attenuates or resolves one or more symptoms of the disease, but not the underlying mechanism nor the triggering cause. Correct symptom therapy can greatly improve patients’ quality of life.
November 19, 2021 (change November 19, 2021 | 20:58)