This Friday, like every September 22, the World Narcolepsy Day, a rare sleep disorder, but one that affects a significant number of people around the world. This disease is mainly characterized by a excessive sleepiness during the day, manifested by sudden and uncontrollable sleep attacks; a situation that can significantly complicate the daily lives of those affected. Narcolepsy has also been associated with increased risk of psychiatric problemssuch as anxiety and depression, or developing eating disorders.
It is a chronic condition, so there is no possible cure. Now, there are some strategies and treatments that can help control symptoms and improve the quality of life of people who suffer from them. These include medications, lifestyle changes, cognitive behavioral therapy and emotional support.
In other words, the fact that those affected must live with the disease for life does not mean that they will not benefit greatly from a early diagnosis. This is the reason why an anniversary like today was established. Celebrating “World Narcolepsy Day” allows us to give visibility and raise awareness about this pathology with which we live. 1 in every 2,000 peopleas well as about the importance of its diagnosis.
The narcolepsy It is a very underdiagnosed disease. We are talking about there being, approximately, a delay of between 8 to 15 years from the onset of symptoms until a professional makes a diagnosis. The first symptoms of narcolepsy usually appear in adolescence, although they often go unnoticed due to lack of knowledge… or perhaps because excess of misinformation.
The diagnosis of narcolepsy can be complicated, especially in mild cases, due to its variety of symptoms and their similarity to other sleep disorders. According to estimates by the Spanish Society of Neurology, in Spain alone there are around 25,000 people affected by narcolepsy, to some degree. But it is believed that, of all of them, only 20% or 40% of all cases have been diagnosed. Indicating that we still have a lot to do.
Fortunately, in recent years diagnosis times have been improved thanks to the discovery that the cause of the disease is the loss of the hypothalamic neurons that synthesize hypocretin. It is true that we still do not know the exact reason for this loss of neurons and the way to administer hypocretin to patients (which would be ideal).
But some promising pharmacological treatments have been developed. However, currently there are pharmacological treatments and non-pharmacological treatments available that allow patients to experience significant improvement, especially in two of the main and most disabling symptoms: cataplexywhich is characterized by episodes of loss of muscle tone mainly triggered by emotions, and excessive sleepiness during the day.
It’s fundamental raise awareness in society in general and the scientific community on narcolepsy, to identify and diagnose properly undiagnosed cases and improve the quality of life of patients. Likewise, it is also essential to provide support and understanding to those who suffer from this Sleep disorder.
