An 18-year-old girl with a rare condition that causes her to sleep for up to three days at a time has called herself the real-life Sleeping Beauty.
Hermione Cox-Denning from Wales has been diagnosed with Kleine-Levin syndrome also known as Sleeping Beauty syndrome. The student explained how her condition caused her to sleep for up to three days without having to use the toilet or eat.
The 18-year-old student said that alcohol also triggers her condition and causes intensive sleeping.
Hermione, who experiences multiple episodes of snoozing, is now limiting her alcohol consumption to keep her slumbers under control.
Remembering the first time it happened, she said: “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 Liam, 50, and Clare, 54 first thought their daughter had been struck by a flu as her health returned to normal within a week.
But after a few months, she had another episode, where she fell asleep for many 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.”
When she had another episode in January 2016, her parents started to see help from experts.
“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.”
Her episodes continued occur many times and started happening almost every two months. In September 2017, she was referred to a neurologist.
“By then, I had been researching sleep disorders on the internet. The first thing that had come up was sleeping beauty syndrome.
It all matched up, but my family and friends had told me, ‘Don’t rush in to anything’.”
After a Skype consultation with Bronglais Hospital, Aberystwyth, medics agreed with her that she likely had Kleine-Levin syndrome. Then, she was referred for a string of scans and tests.
When her tests come back clear in March 2018, it was confirmed that she has KLS or Sleeping Beauty syndrome.
“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.
The neurologist said that many KLS patients experience episodes decreasing in frequency as they age. She also hopes that it will be the case for her.
Hermione 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.”
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