Many of us use the phrase “I could sleep for days” when we’re exhausted, but for one Pennsylvania girl, it’s not just a saying; it’s reality.

17-year old Nicole Delien has a rare disorder called Kleine-Levine Syndrome, commonly referred to as “Sleeping Beauty Syndrome”. She endures several episodes a year, during which she passes out for up to 19 hours a day before she wakes in a sleepwalker-like state to eat and use the bathroom, then returns to bed. The disorder was difficult to diagnose, but even now that she’s on medication, Delien says she’s scared of when the next episode will strike. The problem is that patients can go for months without exhibiting any signs of the disorder before it sneaks up on them, and it acts quickly.

The Kleine-Levin website states that “At the onset of an episode the patient becomes progressively drowsy and sleeps for most of the day and night (hypersomnolence), waking only to eat or go to the bathroom. When awake, the patient’s whole demeanor is changed, often appearing “spacey” or childlike. When awake he experiences confusion, disorientation, complete lack of energy (lethargy), and lack of emotions (apathy). Most patients report that everything seems out of focus, and that they are hypersensitive to noise and light. In some cases, food cravings (compulsive hyperphagia) are exhibited. Instances of uninhibited hypersexuality during an episode have also been reported.”

Unfortunately for Delien and for others suffering with the syndrome, it renders patients unable to care for themselves, work, or attend school. In Levin’s case, it caused her to miss Thanksgiving and Christmas one year, as well as a concert for her favorite musician, Katy Perry. Perry heard about Levin’s ordeal, however, and secured her backstage passes for her next show.

For now, Delien is dealing with the symptoms as best she can with medication, but she says she worries about when she’ll go to sleep again and fail to wake up.