If a condition is poorly understood, it is even more difficult to diagnose it. And certainly not for the lack of skills of the specialists, but for the lack of awareness on the part of the potential patient. Recognizing the symptoms in time already means doing prevention. With this in mind, she was born #CreateforSleep, the awareness and awareness campaign on narcolessia, created by AIN (Italian Association of Narcoleptics and Ipersonni), with the patronage of AIMS (Italian Sleep Medicine Association), in collaboration with NABA, Nuova Accademia di Belle Arti and with the unconditional support of BIOPROJET Italia.
A campaign that through the involvement of young artists, who had to represent the Red Flags, which is a set of alarm symptoms of narcolepsy, wanted to put this little-known disease in the spotlight.
But what is narcolepsy? It’s a weird neurological pathology chronic caused by the inability of the brain to maintain an adequate level of alertness. Affected individuals suffer from one pathological sleepiness and a phase shift in the alternation between NREM and REM phases, the two different sleep phases that are experienced during the night. The REM phase, in particular, manifests itself suddenly and atypically in affected subjects both during night sleep, replacing the NREM phase after only 15-20 minutes from falling asleep in place of the canonical 90, and during the day, interfering with the regular activities of the individual through sleep attacks.
Narcolepsy is recognized as rare disease, that is a disease that affects about 1 in 2 thousand people (0.05% of the population), since it has a prevalence of 4 cases per 10 thousand inhabitants. It affects men and women equally. Narcolepsy tends to be underdiagnosed worldwide: in Italy, for example, narcoleptic patients are estimated to be around 6 thousand, but those with certain diagnoses are alone 2 thousand.
We talked about it with Massimo Zenti, President of AIN (Italian Association of Narcoleptics and Ipersonni), to get to know it more closely and promote correct information on the subject.
At what age can narcolepsy appear?
“Narcolepsy typically arises ininfantile-pubertal age, with a maximum peak around 15 years, and in young adults, more often towards the age of 35».
What are the symptoms?
«The main symptom that most frequently afflicts narcolepsy patients is the daytime sleepiness, that is, the continuous tendency to drowsiness and falling asleep, which occurs in unusual situations and represents a serious impediment for the person.
Others symptoms, which tend to manifest themselves in affected people often leading to a situation of serious physical and psychological discomfort for the patient are:
• The cataplessia, a sudden and reversible episode of muscle weakness that occurs in conjunction with emotional stimuli and does not involve a loss of knowledge of the affected subject. These episodes can last anywhere from a few seconds to minutes.
• The sleep paralysis, the condition in which the patient, at the time of falling asleep or waking up, feels unable to move or speak. The duration ranges from a few seconds to minutes which are typically perceived as much longer.
• The hallucinations, real daydreams, which can occur when you fall asleep or wake up from sleep. They are often associated with sleep paralysis.
• The fragmentation of night sleep.
In the pediatric patients furthermore, endocrinological and metabolic signs may occur, such as, for example, the precocious puberty and / or the rapid development of excess weight ‘.
What impact can narcolepsy have on quality of life?
«Narcolepsy can have a significant impact in all aspects related to the quality of life. Certainly some symptoms of the disease, such as excessive daytime sleepiness and fragmented night sleep, can cause limitations and difficulties in school and work activities, but also in family and interpersonal relationships. Failure to diagnose and therefore manage narcolepsy and its symptoms can also lead to great limitations in the management of free time (travel, cinema, theater, going out with friends, sports). Finally, the delayed diagnosis and the bizarre symptoms often expose patients to stigmatization and sometimes to episodes of bullying ».
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