ABOUT six thousand people in Italy suffer from narcolepsy, but of these, only two thousand have received a certain diagnosis. It is a chronic disease with complex symptoms which, if not recognized or treated adequately, can become disabling. The five most distinctive symptoms almost never occur all together and can take different forms from person to person, making diagnosis difficult and often delaying it. Last but not least, narcolepsy is little known even among doctors and is often confused with other diseases. The first step to ensure a certain and timely diagnosis, according to the Italian Narcolepsy Association (Ain), is knowledge. Thus was born #Createforsleep, a campaign launched last July with the patronage of AIMS (Italian Sleep Medicine Association) and with the unconditional support of Bioproject Italia, which challenged the students of the BA in Graphic Design and Art Direction of the New Academy of Fine Arts in Milan (Naba) to create an artistic representation of the five alarm bells of the disease. There are also five finalists and, among these, the first place went to the design of Anna Bonomi, which represented one of the most common symptoms: daytime sleepiness.
What is narcolepsy
The causes in narcolepsy seem to be attributable to the lack of a neurotransmitter, orexin, responsible for regulating the sleep-wake rhythm. The first consequence is that, during the hours of night rest, the alternation of the five phases that make up the sleep cycle is not respected. In particular, the transition from the Nrem phase (Non rapid eye movement) to the Rem phase is too fast: it occurs only 15-20 minutes after falling asleep instead of 60-70. However, the delay in the diagnosis of this disease – which can occur even ten years after the onset of symptoms – makes it difficult to reconstruct the precise biological causes. Not only that, narcolepsy is often confused with diseases such as epilepsy or psychosis, and therefore inadequately treated, making it even more disabling – physically and socially – for those who suffer from it. Here then are the main symptoms.
Disturbed nocturnal sleep
One of the fundamental characteristics of the REM phase, the one in which we dream, is that it is associated with a loss of muscle tone and inability to perform movements. It is a defense mechanism on the part of the brain, which prevents the body from really performing the actions it is dreaming of, avoiding dangerous situations. This is precisely one of the mechanisms that is put in crisis by narcolepsy: upon awakening, the dream is remembered very clearly and vividly through the movements performed. The only way to diagnose this disorder – whether it is present in children or adults – is for one close person to observe the other while they sleep and realize what is happening.
Excessive daytime sleepiness
This is the most subjective, widespread and easily confused of the symptoms, especially when it does not manifest itself with incoercible sleep attacks. It can cause an imbalance in the alternation between sleep and wakefulness, progressively increasing the number of hours of sleep during the day, or it can generate decreases in attention, hyperactivity and irritability. In these cases, the patient experiences a state of alteration in the perception of reality, which manifests itself in the inability to actively live the present. Just as you can see in the image, drawn by the winner of the #Createforsleep campaign: a boy among the school desks (adolescence is a typical age in which narcolepsy develops) perceives a confused, deformed, fuzzy world, at the which does not know how to participate. On a social level, in fact, it often happens that narcolepsy patients are not understood and are instead judged and punished, risking developing serious psychological distress.
Cataplessia
A great and sudden emotion, a crowd of people, a party, a surprise: I fall to the ground, unable to move, while remaining conscious. It sounds like a senseless, perhaps absurd reaction, but that’s exactly what can happen to a narcoleptic patient in such a situation. This graphic representation tells it well: the person in the center is forced into the role of spectator in a situation in which he is unable to take part. The medical name is cataplexy and manifests itself with the sudden loss of muscle tone of some or more parts of the body (in the drawing, probably the legs), or with a facial paralysis that can last up to half a minute (the “cataplectic facies”). Often, it happens precisely in relation to an emotional event.
Hallucinations
Hallucinations are also part of sleep disorders and occur shortly before falling asleep or waking up. These are generally visual projections of deep fears, horrifying situations that take shape by coming out of the head and taking on clear, almost real contours. It happens, in this representation, to the girl sitting on the bed: the brain gives shape to her fantasies by illuminating them and projecting them outside, confusing them with reality. In the case of children, hallucinations are confused with simple nightmares, in the case of adults, they are often silenced. What is certain is that they generate psychological distress in both categories, further worsening the quality of sleep, in a sort of vicious circle. Once again, it is not easy to trace them back to the disease that generates them.
Sleep paralysis
Those who suffer from narcolepsy often fail to react to dangerous situations (hallucinations for example), fleeing (gazelle) and not even attacking (lion), but is forced in spite of himself to a third reaction: paralysis. This is the case with the concomitance of two of the worst symptoms of the disease: hallucinations and paralysis. Like the former, paralysis also occurs upon awakening or during falling asleep. It generally lasts a few seconds, but in children it can last for a few minutes and, if accompanied by hallucinations, can trigger a feeling of alarm and malaise.
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