“I once fell asleep in the middle of an important meeting,” Karolina recalls. “I had no control over it. One moment I was listening, the next, I was being shaken awake by my boss.”
Karolina, a 32-year-old financial analyst, had been struggling with extreme fatigue since her late teens. At first, she thought it was just burnout from long hours at work, but the sudden sleep attacks became impossible to ignore.
After being diagnosed with narcolepsy, Karolina started medication and made lifestyle changes, including scheduled naps and a structured work routine. Her employer also provided accommodations, allowing her to work flexible hours. Though daily life remains challenging, Karolina has learned to manage her condition and advocate for others with narcolepsy.
And it is important to talk about it. Karolina’s case is a success story.
However, according to global statistics, a few thousand people in Lithuania suffer from narcolepsy, yet only 30 are currently diagnosed and receiving treatment. It can take 10-15 years from the first symptoms—often appearing in adolescence—for narcolepsy to be properly diagnosed.
“When it comes to adolescents, don’t ignore daytime sleepiness. It is a cause for concern if a teenager falls asleep during school or other activities, has a recurrent and irresistible urge to sleep, is difficult to wake up in the morning, sleeps significantly more than their peers during the day, and is noticeably more agitated upon waking up,” says child neurologist Dovydas Burkojus, MD, from the Kaunas Clinics Neurology Clinic.
Often, patients with narcolepsy are misdiagnosed and referred to psychiatrists or other specialists for treatment of unrelated conditions, leading to delays in proper care.
If left untreated, the symptoms of narcolepsy worsen and significantly interfere with daily life. One of the most characteristic symptoms is cataplexy—sudden muscle weakness in the face, neck, or knees. In severe cases, this weakness spreads throughout the body, causing a person to collapse as if in sleep. Sleep paralysis is another symptom, leaving individuals temporarily unable to move despite being awake.
Currently, only two clinics in Lithuania—one in Kaunas and one in Vilnius—offer diagnostic testing for narcolepsy. However, early recognition by family doctors is crucial, yet many lack the necessary knowledge.
“Our main goal at this stage is to improve access to diagnosis, as next-generation medicines are already available,” says Sandra Ivanauskienė, founder and leader of Norameda’s Special Care Medicine Department.
In collaboration with the French pharmaceutical company Bioprojet Pharma, Norameda has introduced a new-generation medication for treating narcolepsy. It is the first and only once-daily tablet approved by the FDA to treat excessive daytime sleepiness or cataplexy in adults with narcolepsy.
Most importantly, Lithuanian patients now have access to the most innovative treatments available, ensuring they can manage their condition effectively and improve their quality of life.