Sleep sick: "I have never arrived awake from Actur to Puerto Venecia"

When she was little, Susana Hernández was considered by her family to be a little studious, lazy and sleepy girl. She remembers that she would fall asleep in class or watching a movie at home, for example. What she didn't know is that she suffered from narcolepsy - a pathological state characterized by irresistible bouts of deep sleep. She found out when she was 20 years old after suffering an attack of cataplexy or cataplexy (a disease that Jordi Évole suffers from), that is, losing muscle vigor in the face of a strong emotion such as fear, surprise or laughter. Now, at 47, she is no longer ashamed to publicly acknowledge that she suffers from both and when she meets someone the first thing she tells them is: "If you see me falling, give me a chair."

Susana is one of the first members of the Spanish Sleep Association (Asenarco), nationwide, based in Zaragoza and founded in 1998. Non-profit, public utility and made up of volunteers, this association currently has nearly 900 members throughout Spain, the vast majority from Aragon. And the main objective of the patients who make it up is that other people in the same situation can "catch in time" the sleeping sickness they suffer from (there are up to 200 pathologies, Asenarco reports). Precisely, this Friday marks World Sleep Day.

"I felt like a weirdo. In those years these things were not studied. On a television program I met the Association and seeing people who had things like me helped me a lot to cope with the disease. There is no curative treatment. I take medication to lead a 'normal' life and 10 years ago I was completely incapable of working," explains Susana, who suffers from severe narcolepsy with cataplexy.

This woman from Zaragoza recognizes that she has no choice but to learn to live with the disease. When she notices "the laziness", she closes her eyes, takes a deep breath and it goes away; Other times, however, she fails and falls. Her big problem is cataplexy, collapsing on the street due to a sudden appearance of Morpheus does not happen to her because she knows how to control it with "sleep hygiene" (three naps a day if she is active). However, she recounts complicated situations that she has experienced. "From Actur to Puerto Venecia I have never arrived awake. I fall asleep on public transport or in the car if they take me; I can't drive. Or I wake up on the bus and I don't know where I am," she details.

Danger on the road due to sleep apnea

For his part, José Luis Villuendas, co-founder of Asenarco and with chronic sleep apnea (a potentially serious disorder in which breathing stops while one sleeps), recounts dangerous experiences behind the wheel when he was a salesman. "Many times the rumble of the road has woken me up and prevented me from having a car accident. I would wake up exhausted and work up to twelve hours; it was a daily overexertion. I was an athlete and on some occasions they took me to the emergency room believing I was a heart attack," he highlights.

At 30 years old he was treated with anxiolytics when in reality he had apnea; One day her body did not respond and she had vertigo for 16 months. "It was following a television program in which they talked about apnea when I went to the MAZ and they detected it there, I was 40 years old. Long periods of time without treatment can cause heart attacks and even strokes. And because of an advertisement I went to the Association," he says.

For 23 years he has been sleeping with a CPAP - a device that provides air flow - and continues with medication. "We look like airline pilots. Autocap does not cure apnea, but it prevents you from having a cardiac arrest or a stroke. When I catch it late, my sleep is broken and if I make efforts I can have an anxiety attack," he says while showing the little box with pills that accompanies you at all times.