Patient Stories

“It’s important to elevate awareness of narcolepsy so that other people experiencing symptoms don’t spend years feeling embarrassed, misunderstood, and alone and can start on a path to better understand their symptoms.”
Did you know it is estimated that more than half of people living with narcolepsy don’t even know they have it?

Major Symptoms of Narcolepsy
  • Excessive Daytime Sleepiness
  • Cataplexy
  • Disrupted Sleep
  • Sleep Paralysis
  • Hypnagogic Hallucinations

Journey to Diagnosis: Sam’s Story

Misunderstood. Overlooked. Underdiagnosed. Journey to a Narcolepsy Diagnosis

Narcolepsy is a condition that is often misunderstood, overlooked and underdiagnosed. Since awareness of narcolepsy is low, it’s unsurprising that Sam lived more than a decade experiencing symptoms without a diagnosis. He first showed narcolepsy symptoms in middle school when getting up in the mornings was nearly impossible. He found it painful just to open his eyes and would often fall back asleep at the first available opportunity. What he and his family didn’t realize was that Sam was actually experiencing something called excessive daytime sleepiness, which is a symptom of narcolepsy.

Many people write off excessive daytime sleepiness in teenagers because it is assumed teenagers want to sleep more often and can often be seen as “lazy” or “unmotivated.” For Sam, this was a problem he experienced and for years he felt that he couldn’t function normally.Sam was a passenger in his own body, where his symptoms controlled him and he was not the driver of his own life.

In college, Sam’s symptoms peaked. It was common for him to sleep for most of the day. He struggled to make it to classes, and would sleep as much as he could in order to be able to work on weekends. Sam was embarrassed by his symptoms and as a result kept his sleep schedule a secret from those around him, afraid he would lose their respect if they knew how much he had to sleep to be able to function.

After a decade of struggling with excessive daytime sleepiness and trying to find ways to stay awake during regular day-to-day activities, Sam underwent a sleep study where he was immediately diagnosed with narcolepsy. He feels like his life journey began after diagnosis because he finally had an answer for why he was so tired. He and his doctor determined a treatment plan that worked for him so that Sam could “re-start” his life with an understanding of narcolepsy.

Sam believes that working with a physician to get a diagnosis is the most important step for patients experiencing narcolepsy symptoms, like excessive daytime sleepiness. Only then can patients truly understand their symptoms and how to manage them.

Narcolepsy was debilitating for Sam, in part because he didn’t know he was experiencing symptoms of a real condition.