The Latest Statistics of Narcolepsy

Narcolepsy statistics

Narcolepsy is a chronic sleep disorder that causes excessive daytime sleepiness. Although many people are affected, most people don’t understand what the disorder truly is or how frustrating it can be.

Understanding statistics about this disorder can be helpful for educating the general public, and it can help those with the disorder see how they compare to others who suffer from it. Here are the latest statistics on narcolepsy:

Prevalence

About 3 million people worldwide are estimated to have this disorder, including about 215,000 in America. This is about 0.07 percent of the American population or one in every 2,000 people. However, these numbers are just estimates. Because so many people are misdiagnosed or undiagnosed, the actual number of people with this sleep disorder could be much higher.

This disorder affects men and women equally. However, some countries and regions experience much higher rates of this disorder than others. For example, the highest known occurrence is in the Japanese, with about one in 600 people being affected. The lowest known occurrence is in Israeli Jews, with about 1 in 500,000 people being affected.

This disorder is as common as MS and Parkinson’s and more common than cystic fibrosis, but it is not nearly as widely known or understood. Although millions of people worldwide suffer from excessive daytime sleepiness, there are many misconceptions about the disorder.

About 10 percent of patients also have a relative with the disorder, and the risk of having the disorder is anywhere from 10 to 40 times greater if a first degree relative has it. In many cases, the disorder is linked to genetics. About 25 percent of the population carries the gene that causes excessive daytime sleepiness, but only about one in 500 of those people will actually develop the disorder.

This disorder doesn’t just affect humans. Rodents and canines can have it as well. This was first discovered in the 1970s and has been helpful for studying potential treatments on rats and mice.

Symptoms

Symptoms can develop at any age, but they typically appear when the patient is between 15 and 30 years old. It’s very rare for signs of excessive daytime sleepiness to appear before adolescence, but it has happened before.

In most people, the signs of the disorder don’t worsen over time. They sometimes appear with age, but they rarely fully go away.

Excessive daytime sleepiness is the cardinal symptom of the disorder and affects 100 percent of patients. There are many other signs, though, including:

  • Cataplexy, or loss of muscle tone
  • Sleep paralysis
  • Hallucinations
  • Fragmented sleep
  • Automatic behaviors

Between 10 and 25 percent of patients experience all of the features of the disorder.

The majority of people who experience cataplexy are triggered after a strong emotion, like laughter or anger.

This disorder has two types. With type 1, the patient experiences cataplexy or has low levels of hypocretin, a brain hormone. With type 2, the patient doesn’t experience cataplexy and has normal levels of hypocretin. Type 2 is usually less severe than type 1, but there are no known causes for type 2.

Because of excessive sleepiness and the risk of falling asleep, patients with this disorder experience 10 times as many traffic accidents as people without the disorder. Fortunately, those who treat their disorder with medication have the same accident rates as people without the disorder.

Diagnosis and Treatment

It’s estimated that only about 25 percent of those with the disorder are properly diagnosed and receive treatment. Of the population in America expected to have the disorder, this is about 54,000 people.

About 60 percent of patients are misdiagnosed. The most common misdiagnoses are depression, insomnia, and obstructive sleep apnea. Many of those who have the correct diagnosis had to wait years before being diagnosed. The average length of time between symptom onset and diagnosis is seven years.

There are five treatments approved by the FDA:

  • Sodium oxbate (Xyrem)
  • Modafinil (Provigil)
  • Amodafonil (Nuvigil)
  • Methylfenidate (Ritalin)
  • Amphetamine (Adderall)

According to a Unite Narcolepsy survey from 2013, about 95 percent of respondents have used one of these medications. About 70 percent use other prescriptions, and 80 percent use other treatments like diet changes and lifestyle modifications. Although there is no cure for excessive daytime sleepiness, the majority of patients are able to manage their symptoms with various treatments.

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