What is Sleeping Beauty Syndrome? Woman suffers from rare syndrome that makes her sleep for 10 days

Sleeping Beauty Syndrome sounds like something straight out of a fairy tale. However, for Bella Andreou, it is an absolute nightmare.

The woman, in her twenties, suffers from the syndrome and she is known to have napped through ‘holiday, gigs, a friend’s wedding where she was supposed to be a bridesmaid.’ This is something Bella has struggled with since she was a teenager and the hardest part of it might be the fact that her syndrome is not widely known.

For years she was thought to be trying to attract attention and she thought that she was losing her mind. So let’s take a look at what Sleeping Beauty Syndrome is.

What is the Sleeping Beauty Syndrome?

Its real name is Kleine-Levin Syndrome (KLS). Cleveland Clinic describes it as:

an extremely rare condition that causes intermittent episodes where you sleep for long periods of time, which prevents you from staying awake during the day

For instance, during an episode, people diagnosed with Kleine-Levin syndrome can sleep for ‘16 to 20 hours per day.’ According to the Cleveland Clinic, men and people assigned male at birth are the most likely people to be affected but realistically, anyone can be diagnosed with KLS.

Kleine-Levin Syndrome symptoms

Its symptoms usually appear during adolescence and they include ‘extreme sleepiness and inability to stay awake’, ‘increased appetite and sex drive’, ‘hallucinations’ and ‘confusion or amnesia.’ The episodes can last for ‘a few days’ but they average at around ‘10 days’ and could even last for two weeks.

While it is mostly understood that during an episode the patient sleeps, this isn’t the reality of it. During an episode, someone who suffers from KLS can get up and go to the bathroom. However, they will not be able to function as if awake.

What are its triggers?

According to Cleveland Clinic, an episode can be triggered by several things. The triggers are diverse and can be the ‘flu’, ‘drug and alcohol consumption’, ‘head trauma’ or even ‘stress.’

When it comes to what causes the syndrome, it is unknown. Cleveland Clinic explains:

Some studies suggest that an illness or injury causes damage to the part of your brain that regulates sleep.

Most cases of KLS occur after having an illness similar to the flu or an infection. Research speculates that KLS could cause an autoimmune response where your body confuses healthy tissue with an invading organism, which causes symptoms.

Other research suggests that KLS could be genetic, related to mutations on genes LMOD3 and TRANK1.

Bella’s battle with Sleeping Beauty Syndrome

Bella and her fiancée’s story has been shared by Mirror. Bella has been suffering from episodes since she was a teenager. She remarks that her first episode started the day after she got drunk.

This episode scared her and of course, no one suspected KLS. Bella explains:

For a few months I was living with the fear that I was going mentally insane, thinking somebody was going to lock me up, I knew something was wrong with me - my parents described it as 'the lights are on but nobody's home'.

Being diagnosed with KLS is very difficult according to Cleveland Clinic. Unfortunately for Bella that meant years of doctors trying to guess what could be the cause of her episodes. At some point they thought it could come from her contraceptive pill. They also ran tests to ‘rule out tumours, cancer and epilepsy’.

Because of her episodes, Bella’s life has been interrupted more than once. She shared with Mirror that the syndrome disrupted her A-levels and her nursing degree. This makes sense when you know that episodes can be triggered by stress. For instance, before she met her fiancée she hadn’t had an episode in two years but when the couple moved house, the move triggered an episode.

According to her fiancée, Bella is ‘like a ghost’ during her episodes.

She doesn't really know what's going on. Her eyes are open but you can see straight through them.

For Bella, Sleeping Beauty Syndrome is robbing her of the time she has. Bella and her partner have now taken to TikTok in order to raise awareness for KLS as even to this day, when taken to an emergency room for a severe episode, medical professionals don’t know about KLS.

It should also be noted that awareness might bring solutions to this very rare syndrome as to this day, but there is no treatment that can help with KLS.

Read more:

⋙ This 3-year-old girl only needs 90 minutes of sleep a night

⋙ This is why we sleep less as we get older, science explains

⋙ Experts reveal if you should sleep with your windows open at night

Sources:

Cleveland Clinic

Mirror: Nurse with 'Sleeping Beauty syndrome' who sleeps for up to two weeks at a time