"I'm always tired, no matter how much I sleep."
NARCOLEPSY - FROM THE HEART
Narcolepsy is a chronic condition that can severely affect patients' lives. It leads to uncontrollable sleepiness and sudden attacks of muscle weakness, making daily tasks difficult. Mathieu Lievens shares his personal story, which provides insight into the challenges and hopes of people with narcolepsy.
A LIFE WITH NARCOLEPSY
Mathieu Lievens, 38, from Jabbeke was born with narcolepsy. Yet he was not diagnosed until later, after a dramatic incident. "Because of my constant fatigue, I always thought I was suffering from iron deficiency. But in 2006, things suddenly went wrong. On the way home, I unexpectedly fell asleep while driving. I woke up in a spinning car on the Jabbeke exit. I had no control over the car and was terrified. Fortunately, I got home safely, but my mother decided to call a neurologist immediately. After a few tests, it turned out that I have narcolepsy type 1."
The diagnosis was a relief, but it also brought limitations. "It was good to know what was going on, but I was not allowed to drive for six months to get my medication in tune. That was difficult, but necessary for my safety and the safety of others."
"Daytime sleepiness can be life-threatening, as I have experienced myself."
FIGHT AGAINST FATIGUE
Mathieu's daily life is greatly affected by his narcolepsy and recent diagnosis of mild autism. Despite his constant fatigue, he works full-time as a mailman. "Whether I sleep four, six or 12 hours, it doesn't matter-I always stay tired. On days off, I try to compensate with multiple naps," he says. His workday starts early, around 4:45 a.m., and he usually finishes by noon. "After work, I eat something, take a shower, and take a two-hour nap. After that, it takes me a lot of energy to get anything else done, such as household chores or cooking. The combination of work and personal life is tough."
Maintaining social contacts is an additional challenge for Mathieu. "Appointments take a lot of energy, and I often have to cancel them," he explains. This increases the likelihood that he feels isolated. "If I want to schedule social activities, I first have to build in extra sleep and carefully adjust the hours to make it possible."
Structure, then, is crucial in narcolepsy. "Without a tight schedule, I don't get anything done. I have to plan exactly when I have time for things like administration, and social moments have to be scheduled in detail," he says.
STRONG EMOTIONS, WEAK MUSCLES
In addition to drowsiness, Mathieu regularly suffers from cataplexy, a sudden weakening of muscles often triggered by strong emotions such as laughter or fright. "That can be very annoying. When traveling long distances, I prefer to take the train so as not to take a risk."
His medication plays an important role in his daily functioning. "Since my diagnosis, I have been taking Provigil. I take one pill a day, and that works well enough to do my job. I can take more, but that has negative effects. I then become irritable and short-tempered, so I want to avoid that."
"There needs to be more understanding in the workplace of people with narcolepsy," he said.
Awareness of narcolepsy is crucial, according to Mathieu, both for patients and those around them. "Daytime sleepiness can be life-threatening, as I have experienced myself. It is important for family and employers to understand why naps are so necessary. People often think you are lazy, but that is a misunderstanding. Education is therefore very important."
Mathieu also sees opportunities for better support from society. "There should be more understanding in the workplace. Naps during work should be possible for people with narcolepsy. In addition, talking groups or buddy systems would help to share experiences and find support."
Although Mathieu has never participated in a clinical trial, he is positive about it. "I would love to participate in a study, especially to help other patients in the future. It's important to keep researching new treatments. Now we mainly fight the symptoms, but hopefully someday we can address the cause or even prevent it."
Mathieu's story highlights the need to continue the fight against narcolepsy. Do you recognize yourself in Mathieu's story? Sign up for our research on a new drug targeting the cause of narcolepsy. Find out if you can contribute to this important study!