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During the day, sleepiness is almost invincible, and you also fall asleep at school or at work. Children are the ones who pay the price for these uncontrollable attacks, which often follow an extremely disturbed night’s sleep. But this situation can also be observed in adults.
Unfortunately, even if it is an overall rare picture, the origin of these problems is to be found in narcolepsy, a rare chronic neurological disease characterized by an irregular sleep-wake cycle and by the appearance, during wakefulness, of sudden periods of sleep that cannot be controlled by the subject, whether or not associated with cataplexy.
The most prominent symptoms are excessive daytime sleepiness, disturbed nighttime sleep, hallucinations upon falling asleep or upon awakening, and sleep paralysis, which consist of the sensation of not being able to move for a few seconds, sometimes even minutes, always in the moment. falling asleep or waking up.
The picture is not recognized
Experts sound the alarm: narcolepsy is a strongly pathology under diagnosed. In Italy, a country at the forefront in this field, the average time for a diagnosis from the appearance of the first symptoms is 5 years, while in Europe and the United States it is even 15 years.
“Being able to reach an early diagnosis of narcolepsy – explains Giuseppe Plazzi, president of AIMS – Italian Sleep Medicine Association – is particularly important because the treatments, even if at the moment they are only symptomatic, at the beginning of the disease would be extremely more effective. Narcolepsy in 50% of cases is a pediatric disease, onset around the age of 12, but can appear at any age. It is often not recognized in children and adolescents who show attention or learning difficulties, the consequence is that school performance and interpersonal skills are compromised. ADHD (attention deficit hyperactivity disorder) is one of the most common misdiagnoses made to these subjects due to the similar symptoms of both conditions ”.
What to pay attention to? Plazzi himself recalls that sentinel symptoms, are represented not only by sleep, but also by nervousness, cataplexy or metabolic problems.
“In children, daytime sleepiness, disturbed sleep, hallucinations at the time of falling asleep or waking up – reports the expert. Although important steps forward are being made in accelerating the diagnosis of narcolepsy, the years of delay in diagnosis remain too many “.
Not just children
Narcolepsy in 50% of cases is a pediatric disease, onset around the age of 12, but can appear at any age. For this we need to think about it. Make one early diagnosis of narcolepsy is particularly important because the treatments, even if for the moment they are only symptomatic, at the beginning of the disease would be extremely more effective.
“The diagnostic delay – reports Massimo Zenti, president of the Italina Narcolettici e Ipersonni (AIN) Association – is mainly due to the lack of knowledge of the disease and, in general, to the lack of attention that there is towards sleep and related disorders. The consequences for patients are enormous: incorrect diagnoses and therapies, years of journeys of hope to find an expert who knows something, money spent on examinations and private visits, loss of days of work and school, difficulties in having social relationships, complexes of inferiority, depression, anxiety, obesity. However, you can learn to live with the disease by knowing its characteristics, the possibility of living well even with the disease is there: planning naps, taking medications regularly, avoiding binges, alcohol use. You can lead a life very close to normal, you can study, work, drive your car. Often it is enough to realize and accept the condition that it takes different times to do many things to people with narcolepsy ”.
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