Some say it’s the condition that locked Sleeping Beauty into her long slumber: but Kleine-Levin syndrome hasn’t been in any way a fairytale for Gemma Garfirth and her family. She has had the condition, which is characterised by long periods of sleep followed by strange behaviour, for two years. Gemma, 17, has snoozed through lessons, parties and even a week-long camping holiday. “When she’s in what we call an episode, she tends to sleep solidly for three days and nights,” says her mother, Mandy, 42.
“I can wake her up for maybe 10 minutes to have some food, but it has to be absolutely ready or she falls asleep before I can get it to her.
“Then follows another four days or so when she’s really odd. One time she woke up and insisted she could only speak French; another time, she kept playing DVDs back to back.”
Gemma’s first experience of KLS was frightening for her mother. She was recovering from a chest infection and suddenly seemed confused. “She was adamant that she’d sent text messages she hadn’t sent, and then she started being hyperactive and silly,” says Mandy.
She phoned NHS Direct and was told to call an ambulance. By the time it arrived, Gemma was lying on the floor saying her arms and legs didn’t move any more.
At A&E, staff were sure that Gemma was on drugs, says Mandy. “I knew she wasn’t, but they were certain. They took her away on her own to question her, expecting her to admit to having taken illegal substances. But, of course, she didn’t. And I said, why not test her for drugs? In the end they did, and the tests were negative.”
As Gemma fell into a deep sleep, a battery of other tests followed. “It was incredibly worrying – it could have been a brain tumour,” says Mandy. “But everything came back negative.”
Meanwhile, Gemma had woken up and regressed to the behaviour of a pre-schooler. “When she wasn’t asleep, she was calling me Mummy again and wanting to sit on my knee and sing nursery rhymes,” says Mandy.
But to the family’s surprise, Gemma was discharged – staff told Mandy they couldn’t do anything for her. “I was really unhappy at having to take her home in that state,” says Mandy.
“But then a few days later, in the blink of an eye, she came out of it. She just changed, instantly, back into her normal self again.”
Mandy says she felt ecstatic to have her daughter back but was terrified it would happen again. And a month later, it did. After a third episode, Gemma was referred by her local hospital in Wellingborough to the John Radcliffe hospital in Oxford for more tests – and for the first time the family heard about KLS.
“There are only about 40 people with it in the UK and only about 1,000 in the world – typically, adolescents are affected,” says Mandy.
She is a single parent who also has a 13-year-old son, Liam. They were all relieved to have a diagnosis but anxious about how far-reaching the condition would be. Though Gemma had only experienced week-long episodes – still the case – doctors said they could last for up to six weeks at a time. There is no known cure for KLS and although Gemma will almost certainly grow out of it eventually, it could take a decade or more.
The effect on Gemma’s life has been enormous. “I never remember anything about being in an episode, but now I’ve had so many – 14 so far – I recognise the signs when I’m going into one. I feel a bit different and I know what’s coming: it’s really upsetting and frightening, and I cry a lot because I know I’m going to be plunged into sleep and I don’t want to be. I’ll be missing lots of things – sometimes a friend’s party or a concert, or something I’m involved in at school.”
When Gemma is on the verge of an episode, says Mandy, the family go into lockdown. “We can’t have anyone else in the house: after three days sleeping, Gemma tends to come out of it slowly and her behaviour at those times is very strange – she is sometimes aggressive and she swears. It’s absolutely not in character and it would be horrid for her for anyone else to see her like that.
‘I also worry that she might get out of the house and on to the street if she woke up in a disorientated state, so I keep all the doors locked. It means life is very difficult for Liam – he can’t have his friends over, and I can’t do anything with him because I have to concentrate all my efforts on looking after Gemma,” says Mandy.
On top of all the other worries, Mandy fears she is facing redundancy because of Gemma’s illness. “I work as a sales co-ordinator and I’ve been called in for a disciplinary hearing because of all the time I’ve had to take off,” she says. “According to Acas, I’m entitled to the time because Gemma is my dependent, but I’m not hopeful about how it’s going to work out in the long term.”
Equally devastating has been the effect it has had on Gemma’s schoolwork. She managed to get 13 GCSEs – three A stars, four As and six Bs – but by the time she took her first AS level exams earlier this year, all the school absences had taken a toll, and she got a U and two Ds. She’s currently resitting the exams, hoping to get better grades.
“It’s really hard to plan things because I don’t know if I’m going to be awake or not,” she says. “At school my friends know and teachers know, but it’s still very hard for them to understand what it’s like. Once I fell asleep during a maths lesson and my mum had to come into school and the teachers helped to carry me to the car.”
The cause of KLS is unknown; some think it’s an auto-immune disorder, others that it’s a malfunction of the part of the brain that regulates sleep. “I had to wear a special watch all the time that monitored my sleep for six weeks,” says Gemma. “What they could tell from the results is that I do have generally disturbed sleep and don’t go into a normal deep sleep as often as I should.”
She now takes sleeping pills in the hope of regulating her sleep pattern but, says Mandy, there’s no guarantee it will change. “The likelihood is that this will be with us for a long time and it’s going to dominate her life through the next few years. Given that these are crucial years, it could really change how her life works out,” says Mandy. “All we can do is cope with it on a day-to-day and week-by-week basis; but it is deeply worrying in terms of what it means for Gemma’s future.”
• More information: kls-support.org.uk