VIDEO. Chloé, suffering from narcolepsy with cataplexy, raises awareness about her disease

“We can’t heal ourselves, we can’t heal.” Chloé is 26 years old and suffers from narcolepsy with cataplexy. Her illness started when she was in 6th grade. Narcolepsy is a sleep disorder that affects the rest of those affected. “It’s notorious enough for people to fall asleep at any moment. Me, I’m not bothered with this phase of the disease, me, it plays on the phases of sleep. That is, I don’t have restorative sleep, I’m only in REM sleep”explains Chloe.

“I draw my strength from my surroundings”

Chloe also has cataplexy, a condition that affects her muscle tone. “We have a liquid in the spine which is called the cerebrospinal fluid and in fact, it is this liquid that allows us to have tonicity in our muscles. I have muscle tone drops and basically my body goes off, all loose, so I’m falling, but I’m not unconscious. I hear everything. When you touch me, I feel. If you open my eyes, I see”details the young woman.

His treatments help him to live in his daily life and to be able to exercise his profession. “We can’t treat ourselves, we can’t heal. The treatments help to stabilize and to ensure that you can live with the disease, but there is no cure for this disease. So in the morning, I have amphetamines which allow me to last the day as much as possible, so that’s what also avoids the sides of drowsiness.

Chloé does not want to let her illness take over, and wants to continue her activities despite everything. “I draw my strength from my surroundings, and today to see that I have managed to move forward. Here, I have my apartment, I have my spouse, we are very well together. We live very well and even if there is the disease, I will not be bedridden all my life, in fact, as I could have trouble imagining my life when I was 15 years old. Today, I’m just here telling myself that there’s worse, we have to fight and I’m so well surrounded that I can’t let go.