Narcolepsy: The Importance of Early Diagnosis in a Rare and Debilitating Disease

World Narcolepsy Day, celebrated on September 22, highlights the concerning issue of the underdiagnosis of this neurological sleep disorder. Generally, narcolepsy manifests in childhood and can take years to be properly recognized. In Spain, it is estimated that around 25,000 people suffer from this condition, with more than 60% of them still not having received an accurate diagnosis, according to data from Bioprojet. This situation not only prolongs the suffering of those affected but also impacts their ability to perform daily activities, such as studying, working, and maintaining social or family relationships.

Narcolepsy is characterized by excessive daytime sleepiness, often including uncontrollable sleep attacks at unexpected moments. Patients may also experience episodes of sudden loss of muscle tone, vivid dreams, hallucinations at the onset or end of sleep, sleep paralysis, and constant fatigue. Data indicates that about 75% of those affected show their first symptoms before the age of 18. However, during childhood and adolescence, these symptoms are often misinterpreted as a lack of interest or behavioral problems, complicating their identification and negatively affecting academic performance and social interactions.

In the Spanish context, the average delay in obtaining a diagnosis is approximately ten years. This delay is attributed to a lack of knowledge about the disease and confusion with other disorders, such as depression or insomnia. As a result, many patients find themselves unable to progress normally in their lives. However, an early diagnosis can provide hope, as proper treatment allows those suffering from narcolepsy to regain stability and lead a more normalized life.

To improve the identification of this condition, Bioprojet has launched the campaign “SE BUSCA,” supported by the Spanish Society of Sleep and the Spanish Association of Narcolepsy and Central Hypersomnias. This initiative uses accessible language to help people recognize the symptoms of narcolepsy. The campaign includes digital advertising and materials in public spaces, directing interested individuals to a website where they can take a diagnostic test and receive guidance on the next steps to take.

If narcolepsy is suspected, it is essential to consult a specialist, especially if daytime sleepiness significantly interferes with daily life or if episodes of loss of strength or sleep paralysis occur.