Nurse, 24, who slept through a year of her life finally discovers cause
Bella Andreou says living with the rare syndrome is a 'living nightmare'.
A young nurse who claims to have lost a year of her life to sleep, even missing holidays and her own birthday parties, has finally discovered the reason for her fatigue.
Bella Andreou snoozes for more than 20 hours a day and becomes a “zombie” for the duration of the sleeping episodes, which can last up to two weeks at a time.
Despite suffering countless episodes since she was 17, the now 24-year-old only just received her official diagnosis of Kleine-Levin Syndrome (KLS) — also known as Sleeping Beauty syndrome — on September 14.
The nurse, from the UK, claims to have lost nearly a year of her life to KLS, having slept through holidays, events, her 19th birthday and New Year's Eve. She even suffered from a bout while supposed to be a bridesmaid at her friend's wedding.
First sleeping episode after school party
Bella experienced her initial episode in 2016 after getting drunk for the first time at a party, sending her into a 10-day-long period of brain fog and sleeping, which she first thought was just a hangover.
“I had just finished my first year of A levels and I went to an after-school party. It was the first time I had alcohol and got drunk and I woke up the next day thinking I had a hangover,” she said. “I had this brain fog, derealisation, and I was in a dream-like state. I woke up and couldn't stay awake. I slept for the majority of the day, more than 19 hours, and it lasted for 10 days.
“My parents were away at the time but they then came home and saw me and thought I’d been spiked, just because of how severe the symptoms seemed.”
GP claims nurse was sleeping for 'attention'
Between the ages 17 and 18, Bella experienced episodes every four weeks lasting between seven and 10 days at a time — but claims she was told by her GP she was just “doing it for attention”.
“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’.
“I’m a very independent person. I’m very bubbly and outgoing, but when an episode hits I become the complete opposite. I become very childlike. I talk like a baby and I'm needy.
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You know when you have a nightmare where you fall off a cliff and then you can wake yourself up. Well for me that nightmare is constant for 10 days.”
Doctors also thought Bella’s symptoms could be a reaction to the contraceptive pill but months of scans and tests to rule out tumours, cancers and epilepsy led to an unofficial diagnosis of KLS by a neurologist.
The nurse now knows her condition can be triggered by alcohol, stress, and her hormones, which she says is why her first episode occurred the morning of her first-ever hangover.
Sleeping Beauty syndrome a 'living nightmare'
She claims that the name “Sleeping Beauty syndrome” fails to capture just how bad the rare condition is, describing it as a “living nightmare” that leaves her “like a ghost”.
Bella’s fiancé Meg says she will sometimes have to take time off work to become Bella’s full-time caregiver, waking her up periodically to give her water and snacks, such as oranges and crisps.
She reached a breaking point recently when looking after Bella in her latest episode three weeks ago and posted a video to TikTok to help raise awareness of KLS and appeal for help.
“It was almost a cry for help. I had taken her to A&E and they would just look at us as if we’re stupid — as if there's nothing wrong with her. No one had a clue about KLS and it was ridiculous,” Meg said. “KLS can happen in an instant and all of a sudden your life just changes — which is what happened with Bella. It was just completely out of the blue.”
Kennedy News and Media
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