Exclusive
MY NIGHTMARE
I’m terrified to go to bed – Sleeping Beauty syndrome means sometimes I don’t wake up for WEEKS at a time
A NURSE is terrified to go to bed as her Sleeping Beauty syndrome means she sometimes doesn't wake up for two weeks at a time.
Bella Andreou suffers from a rare disorder which puts her in a "zombie-like" slumber for more than 20 hours a day.
8
8
It has seen her snooze through entire holidays, gigs, her own birthday parties, and even her friend's wedding while a bridesmaid.
The 24-year-old only received her official diagnosis of Kleine-Levin Syndrome (KLS) - also known as Sleeping Beauty syndrome - on September 14, despite having countless episodes since she was 17.
The nurse, from Newcastle, claims to have lost nearly a year of her life to it - and constantly lives in fear.
She said: "I really struggle with bedtime and going to sleep because of the fear of whether I'm going to wake up tomorrow. Sleep for me is a huge issue.
READ MORE HEALTH NEWS
"I'm only recently out of an episode so my anxiety is more heightened at the moment. I'm having to sleep with the light on."
Bella first suffered a sleeping episode in 2016 after getting drunk for the first time at an A-Level results party.
It sent her into a 10-day period of brain fog and dozing, which she first thought was just a hangover.
Between ages 17 and 18, Bella experienced episodes every four weeks, each lasting between seven and 10 days at a time.
Most read in Health
But her GP allegedly told her she was just "doing it for attention".
She said the nickname 'Sleeping Beauty syndrome' fails to capture just how bad it is, comparing the condition to a "living nightmare" that leaves her dazed and "like a ghost".
Bella, who now lives in Devon, said: "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'm very childlike, I talk like a baby, I'm needy and I'm very dazed.
"I can't function because it's like I'm in a dream that you don't really wake up from."
She added: "It's often called Sleeping Beauty syndrome, which it really isn't. It's anything but beautiful, it's more like a nightmare.
";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.
"For quite a while the GP said, 'It's behavioural. She's just doing it for attention.' And my parents would have to argue and say, 'This is not Bella.' Because that wasn't me.
"I had never had any mental health issues before. And for them to just say it was behavioural was really hard because I wasn't that sort of attention-seeking person."
It's often called Sleeping Beauty syndrome, which it really isn't. It's anything but beautiful, it's more like a nightmare.
Bella Andreou
Doctors also thought Bella's symptoms could be a reaction to the contraceptive pill, a tumour, cancer or epilepsy.
Months of scans and tests finally led to an unofficial diagnosis of KLS by a neurologist in Newcastle.
Bella 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.
"I had just finished my first year of A-Levels and I went to an after-school party," she said.
"It was the first time I had alcohol and got drunk and I woke up the next day thinking I had a hangover.
"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.
"I never got drunk again to the same degree as I did. I'd go out with my friends but I would always be the weird friend who couldn't drink.
"It was a very weird time because I lost a lot of friends. They didn't understand it and they thought I was just being weird.
"It was a very scary chapter - the fear of the unknown."
'ILL ALL THE TIME'
Bella says she was ill "all the time' during her A-Levels, which she completed over three years, and claims KLS often disrupted her studies throughout her nursing degree at Northumbria University.
By the time Bella first messaged her now fiancée Meg Stone, 25, on Instagram in early 2022, she hadn't had any sleeping episodes in two years.
The pair spent six months dating long-distance before Bella made the move from Newcastle to Devon to live with Meg's family.
But the stress of the move sent Bella into a 10-day-long slumber last August - the first of three episodes that her partner witnessed first-hand.
Meg, an engineer from Barnstaple, said 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.
Meg said: "I just miss her when she's in an episode. It's a weird situation because I miss her yet she's right there, but she's just not.
"She's like a ghost. She doesn't really know what's going on. Her eyes are open but you can see straight through them.
"As soon as she's out of the episode she feels very guilty because she says I don't deserve to be in a relationship where she's ill.
"It makes me feel upset because I don't ever want her to feel like that.
"I reassure her all the time that I don't care if a plan has to be cancelled because I'd rather be with her and make sure she's okay."
I can't function because it's like I'm in a dream that you don't really wake up from.
Bella Andreou
Bella said she feels her and Meg are "robbed of time" by KLS, but having her fiancée there to support her has brought the couple closer.
Bella said: "Meg and I do everything together - we're best mates.
"Then to suddenly be a zombie unable to do anything, she often feels like she's just lost me.
"The only way I get out of my episodes is always a night of insomnia.
"Then I get up the next morning and that's it - I'll be right as rain again."
Meg reached breaking point 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.
She said: "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.
"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."
Bella added: "I just wish people would understand and not make jokes about me sleeping all day. I wish I did just sleep all day and that was it.
READ MORE SUN STORIES
"Especially because the lighter my episodes become - in regards to the sleeping aspect - the more of the other symptoms I get, like the child-like behaviour, the anxiety, the fog, the insomnia. These are the symptoms I hate.
"I'd far rather have the deeper episodes because I'm asleep and I don't know what's going on."
8
8
8
8
8
8
Topics