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.
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.
The exact cause of this condition has not yet been determined, but according to a recent study at Emory University School of Medicine they believe a major breakthrough has been made in the discovery that a specific substance has been found in the cerebrospinal fluid (CSF) of study subjects seeking treatment for primary hypersomnia (Sleeping Beauty Syndrome is a severe form of primary hypersomnia). Not to get too technical, but this fluid is one that stimulates the GABA-A receptor where certain powerful sleep-inducing drugs are known to work their magic.
While to date, there hasn’t been a known definitive cure, Nicole’s family has been using a drug cocktail of both narcolepsy and epilepsy medication. The drug combo has reduced Nicole’s KLS incidents to just twice per year.
However, there’s good news on the horizon. For the first time, there is a real hope that something other than true love’s kiss could serve to awaken those who suffer from KLS. One treatment researchers now believe may be effective for treating KLS is the drug flumenzil. Limited trials have been conducted with impressive success. Only time, and further research, will reveal whether this could lead to widespread treatment of this condition.
The primary indications or symptoms of KLS include periods of excessive sleep. The other hallmark of this particular condition is a markedly altered pattern of behavior in those wakeful moments, where the one suffering from the condition appears spacey or confused. During a sleep episode the sufferer may only wake to eat and relieve him or herself then return to sleep. While awake, there is no energy and few emotions. The person with Sleeping Beauty Syndrome may also be excessively sensitive to noise and light during this time as well. One other common symptom of this condition is lack of inhibitions during episodes as well as hypersexuality.
Despite its fairy tale name, there is no promise of a happily ever after for teens suffering from Sleeping Beauty Syndrome. The condition can strike at any time and rob them of huge chunks of their formative years. It renders them unable to hold down jobs, attend school, and even operate vehicles and may cost them quite a few important milestones in life or, at the very least, the memories of many of those milestones. Hopefully, for the sake of all the teens who suffer with this condition today and may contract this condition in the future, the new information discovered about KLS will lead to a swift treatment and potential cure.
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