Girl with Sleeping Beauty Syndrome claims she can sleep for up to THREE DAYS after drinking alcohol
Her test results confirmed that Hermoine suffered from Kleine-Levin Syndrome - the 'Sleeping Beauty Syndrome.'
A teenage girl, 18, from Aberystwyth, is often called a 'sleeping beauty' due to her rare condition which puts her to sleep for three days at a time and sometimes, even a week. Hermione Cox-Denning was diagnosed with Kleine-Levin Syndrome, a condition that triggers deep sleep for days without waking up in the middle for eating or using the toilet.
Hermione revealed that her condition, which she started experiencing nearly three years ago, is often triggered by alcohol intake.
Remembering the first time she slept for days, the recollection of which she says is 'hazy.'
"I just remember waking up for a few minutes throughout the hours and hours of sleep, dreary and confused," she said, as reported by Daily Mail. She added, "My mind was so confused - I couldn't speak, I didn't eat or drink, and I didn't go to the toilet. It was like my body had 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."
She further said; "It was very surreal. It was like nothing I'd never felt before." Her parents Clare, 54, and Liam, 50, initially believed that Hermoine was suffering from a bad case of flu, but to their surprise, she was back to her usual self within a week. However, months after the first experience, Hermoine fell asleep again and this time, for a few days. "I just put it down to being sick again. It did seem odd, but I thought I was just picking up bugs and things," she said.
Meanwhile, Hermoine's parents started looking for a doctor's advise after their daughter experienced yet another episode. "By then, I was getting really concerned. I was missing out on lots of schools. I have predicted really high grades, and I didn't want those to drop," she said. "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." At the same time, the condition was affecting Hermoine's social life, as well.
"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," she said. Hermoine's episodes started increasing after her visit to the doctor as they started happening regularly after every eight weeks. In 2017, she referred to another doctor who suggested she consults a neurologist. "By then, I had been researching sleep disorders on the internet. The first thing that had come up was 'sleeping beauty syndrome,'" she said.
"It all matched up, but my family and friends had told me, 'Don't rush into anything," she added. After meeting a neurologist, she was convinced that she suffered from Kleine-Levin Syndrome, and they asked her to take a series of scans and tests. In March 2018, after the results of her tests were back, it was confirmed that Hermoine suffered from Kleine-Levin Syndrome, otherwise known as 'Sleeping Beauty Syndrome.'
After Hermoine had another bad episode, right after her 18th birthday, she realized that it was alcohol that triggered her condition even more. "There is no way to officially diagnose KLS, but they have to rule out everything else," she said. "My episodes weren't triggered by stress or anything like that. It was completely random and sporadic. I realized that when I drank alcohol, I would often have an episode the next day. I've learned that I can have one or two drinks, but much more than that causes me to plunge into a deep sleep for days afterward. I'm like the real-life Sleeping Beauty."
Despite experiencing a number of episodes, Hermoine is not worried about the future. 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," she said. "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."
She added that she still has episodes where she ends up sleeping for days. "I'm still having my episodes regularly. I will sleep pretty much continuously for three days," she said. 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." In the hopes of raising awareness about her disorder, Hermoine now blogs about it. "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," she said. "I'm lucky as I have an amazing support system, but people with KLS can be misunderstood."