Most of us joke around that need a week’s worth of sleep. But that’s what life is regularly like for Hermione Cox-Denning.
She has a condition called Kleine-Levin Syndrome.
Hermione’s condition causes her to experience extreme episodes of exhaustion that can cause her to sleep for a much as a week.
During that week of sleep she won’t she even wake up to go to the bathroom, eat, or drink.
Kleine-Levin Syndrome is a rare neurological disorder.
According to the KLS Foundation, it can also cause altered behavior and a reduced understanding of the world.
“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 told LAD Bible.
But that’s not the case for all KLS patients. Some of them experience bouts of sleep that can last days, weeks, or months.
“In addition to excessive sleep, a Kleine-Levin Syndrome (KLS) patient’s whole demeanor is changed, often appearing “spacey” or childlike. When awake the patient experiences confusion, disorientation, complete lack of energy (lethargy), and lack of emotions (apathy). Most patients report that everything seems out of focus, and that they are hypersensitive to noise and light. In some cases, food cravings (compulsive hyperphagia) are exhibited. Instances of uninhibited hyper-sexuality during an episode have also been reported,” the foundation’s website says.
Hermione says her episodes can be triggered by alcohol use.
“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. I realized that when I drank alcohol, I would often have an episode the next day,” she explains.
“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.”
But her life is no fairy tale. The condition prevents Hermione from taking part in everyday activities and is making it hard for her to find work or get into college.
“My memory of my first episode is hazy. I just remember waking up for a few minutes throughout the hours and hours of sleep, dreary and confused,” she recalls. “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.”
At first, doctors diagnosed her with 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,” she says.
Hermione says the condition has negatively affected her social life.
“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 says. “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.”
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Hermione is currently focusing on finding what triggers her sleep spells so that she can manage her condition.
She’s also taking a gap year before she goes to college to try and get her condition under control.
The illness can become less noticeable as patients age in some cases and that’s what Hermione is hoping will be the case with her.
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