For one Pittsburgh surburbia teen, Sleeping Beauty isn’t just Walt Disney movie or fairy tale book. For Nicole Delien, Kleine-Levin Syndrome (KLS), sometimes referred to as Sleeping Beauty Syndrome, is more like a nightmare of wondering when the next sleep episode is going to strike and worrying about how much of her life she’ll miss out on the next time it does.
According to a recent interview on CBS, Nicole’s longest sleeping episode lasted from Thanksgiving into January, 64 days to be exact. The only time she would waken during these sleep cycles was in a sort of sleep-like state to eat and then she would return to sleep.
What is Sleeping Beauty Syndrome?
KLS is an extremely rare neurological condition that only affects about 1,000 people around the world according to this Huffington Post article. It’s a severe form of primary hypersomnia that happens to be an extremely difficult condition for physicians to diagnose. Part of the difficulty is that it is such a rare condition. For Nicole, the diagnosis took nearly 25 months to complete. Before the final diagnosis was made, doctors considered everything from a severe virus to epilepsy, and even questioned whether or not she was simply faking an illness in order to gain attention.