A student with a rare condition that causes her to fall into deep slumbers for up to three days at a time has dubbed herself the ‘real life Sleeping Beauty’.
Having initially put her extreme exhaustion down to the after-effects of sickness bugs, Hermione Cox-Denning from Aberystwyth, Wales, 18, has been diagnosed with Kleine-Levin syndrome.
The student, who is currently taking a gap year, has told how her condition can cause her to snooze for up to three days at a time – without even waking to eat or use the toilet.
And now she’s deduced that certain factors – namely alcohol – can trigger a bout of intensive sleeping.
Hermione, who still regularly experiences episodes that see her sleep ‘pretty much continuously’ for three days, is now limiting her alcohol intake to try and keep her snoozing under control.
Hermione Cox-Denning (pictured), 18, from Aberystwyth, Wales was diagnosed with Kleine–Levin syndrome after she began experiencing extreme fatigue around three years ago
Hermione (pictured) recalls experiencing confusion after her first deep slumber which caused her to sleep for an extensive length of time. Her parents Clare, 54, and Liam, 50 believed her unusual behaviour was caused by the flu
Hermione said her recollection of her first episode is ‘hazy’: ‘I just remember waking up for a few minutes throughout the hours and hours of sleep, dreary and confused.’
‘My mind was so confused – I couldn’t speak, I didn’t eat or drink and I didn’t go the toilet. It was like my body shut down.’
‘I was always on my phone before, but I didn’t speak to anyone for a whole week because I kept sleeping. I think a lot of my friends were worried because I just disappeared.’
‘It was very surreal. It was like nothing I’d never felt before.’
Parents Clare, 54, and Liam, 50, initially believed their daughter had been struck by a bad case of the flu as within a week her health seemed to return to normal.
However, months later she experienced another episode, where she fell asleep for a few days.
Hermione said: ‘I just put it down to being sick again. It did seem odd, but I thought I was just picking up bugs and things.’
Hermione (Pictured right alongside friend Ffion) began missing school due to her exhaustion causing her to sleep for days at at time
Hermione’s (pictured with her father) parents advised her to seek medical opinion after her KLS episodes increased. A doctor claimed her change in sleeping pattern was caused by depression and mental health issues
Hermione’s parents began seeking help from experts in January 2016 after she battled yet another episode.
‘By then, I was getting really concerned. I was missing out on lots of school. I was predicted really high grades and I didn’t want those to drop.
‘I went to see a doctor and they said that it was depression and mental health issues. My dad was saying that this wasn’t normal – I wasn’t just napping, I was sleeping for full days.
‘I am really social and outgoing and I wanted to be out with my friends so it was really unexpected. I felt this was something physical.’
Hermione’s episodes continued to increase in frequency after her visit to the doctors and started happening almost every eight weeks.
Eventually, in September 2017, she sought a second opinion from a different doctor, who referred her to a neurologist.
She continued: ‘By then, I had been researching sleep disorders on the internet. The first thing that had come up was sleeping beauty syndrome.
Hermione (pictured) began researching sleep disorders as she believed her extreme fatigue was related to something physical
Hermione’s (pictured) suspicions that she was experiencing KLS was confirmed after speaking to a specialist neurologist at West Wales General Hospital in 2018
‘It all matched up, but my family and friends had told me, ‘Don’t rush in to anything.’
Following a Skype consultation with Bronglais Hospital, Aberystwyth, as the nearest specialist neurologist was in West Wales General Hospital, medics agreed with Hermione that she likely had KLS. From there, she was referred for a string of tests and scans.
In March 2018, when all her other tests had come back clear, Hermione’s suspicions were confirmed that she has KLS, also known as Sleeping Beauty syndrome.
Hermione experienced a particularly bad episode after her 18th birthday party, and now believes that alcohol causes her condition to flare up.
Speaking about her efforts to identify the triggers, she said: ‘It took me a long time to see what was triggering this for me. I knew it wasn’t stress and I couldn’t see a particular food pattern.
‘There is no way to officially diagnose KLS, but they have to rule out everything else.
‘My episodes weren’t triggered by stress or anything like that. It was completely random and sporadic.
‘I realised that when I drank alcohol, I would often have an episode the next day.
‘I’ve learnt that I can have one or two drinks but much more than that causes me to plunge into a deep sleep for days afterwards. I’m like the real life Sleeping Beauty.’
Hermione (pictured) who is now on a gap year after completing her A-Levels revealed she is concerned to learn that there are very few treatments available for her sleep disorder
Hermione (pictured) has begun limiting her alcohol consumption as she believes it could be a trigger of her KLS episodes
Hermione (pictured middle alongside friends Seren and Laura) says she’s worried about how the rare condition KLS may affect her future. She is now trying to manage the illness with completing work placements and applying to university
‘I do worry about it affecting my future. I’m on a gap year at the minute and I wanted to volunteer overseas, but I couldn’t because of my illness.
‘It really upsets me that I miss out of opportunities like that. I’m hoping it will ease and I’ll still be able to go to university. Eventually I would like to study veterinary medicine. My plan is to stay close to home though.
‘I’m still having my episodes regularly. I will sleep pretty much continuously for three days.
‘On the fourth day, it will start to ease, and I’ll get up, go to the toilet and have something to eat. It takes about four days after that to get back to normal.’
Hermione’s neurologist revealed that many KLS patients see the frequency of their episodes decrease as they age – and she is desperately hoping that will be the case for Hermione too.
In the hopes of raising awareness of the condition, Hermione has started blogging about her experiences on YouTube.
She said: ‘I know that people can be ignorant about this and think I am just being lazy. I want to speak out to raise awareness and to encourage more research into the condition.
‘I’m lucky as I have an amazing support system, but people with KLS can be misunderstood.’
Hermione’s YouTube: https://www.youtube.com/channel/UCAXOgId0tuQU-zIIEamiFFw