Why is it important to talk today? It has a profound impact on the lives of sufferers but is also very difficult to diagnose.
For example, according to global statistics, about 500-600 people are suffering from Narcolepsy in Lithuania, but only 30 are currently diagnosed and treated. It can take 10-15 years from the first symptoms, which often appear in adolescence, for Narcolepsy to be diagnosed.
“Our main goal at this stage is to improve access to diagnosis, as next-generation medicines are already available,” says Sandra Ivanauskienė, the founder and leader of Norameda’s Special Care Medicine Department.
One of the first symptoms of Narcolepsy is uncontrollable sleepiness. For example, during the lesson, a child may simply fall asleep. Although such sleep attacks are uncontrollable, it is often thought that the child has not slept well during the night, is struggling to adapt to the changes in his life or is simply lazy.
Often, Narcolepsy patients are referred to psychiatrists or other specialists for treatment for unrelated illnesses as a result of worsening symptoms.
“In partnership with French pharmaceutical company Bioprojet Pharma, Norameda presents a new generation medicine for treating Narcolepsy. It is the first and only once-daily tablet medication that is FDA-approved to treat excessive daytime sleepiness or cataplexy in adults with Narcolepsy,” says S. Ivanauskienė.
If Narcolepsy is left untreated, the symptoms progress and help to interfere with everyday life.
Cataplexy – muscle weakness in the face, neck or knees – is often associated with this condition. This weakness can also spread throughout the body, and in the event of a seizure, the patient falls as their body relaxes as if in sleep. Sleep paralysis can also occur when the person is awake but cannot move their body.
Only two clinics in Kaunas and Vilnius can test patients for the disease. However, a family doctor should be able to recognise Narcolepsy, and they often lack the knowledge.
We want to share the video “Living with Narcolepsy” by Harvard Medical School so that you can understand how drastically it affects people’s lives: