A university student has revealed how the rare syndrome she suffers from means she sleeps for weeks at a time, often napping through exams.
Rhoda Rodriguez-Diaz, 21, from Leicester, has so-called ‘sleeping beauty syndrome’ and can nap for up 22 hours a day. She only wakes, in a dream-like trance, to eat, drink and go to the toilet.
At its worst her sleeping episodes can last three weeks, and it once meant she failed the second year of university after she slept through her crucial end-of-year exams.
“It’s really annoying when people call me lazy,” explained Rhoda. “I do struggle to deal with the effects of it. “But I’m determined to not let it have a big impact on my life. It is one part of me and not who I am. It’s frustrating because I can’t help it.”
As a child Rhoda was diagnosed with hyper insomnia, which is characterised by extreme tiredness. But it wasn’t until September last year that doctors finally discovered the psychology student had the one-in-a-million Kleine-Levin Syndrome (more about the condition at the bottom of this article).
Though Rhoda can go for months at a time without experiencing an episode, when they do hit, she is totally wiped out.
“Life goes on whilst I’m sleeping,” she explained. “Reality hits me when I wake up and realise I’ve missed like a week of my life. I feel a huge setback when it does happen. I miss out on so much. That’s the hardest part of it. It’s hard to explain to people where I have been. Because it’s so rare a lot of people struggle to understand.”
Rhoda recalls how she couldn’t spend as much time with her friends as she would have liked when she was little as she’d sleep for up to two or three weeks at a time.
But then it didn’t happen again until she was a teenager.
“When I was 15 or 16 I remember finding myself sleeping more and more,” she says. “Even at school I would fall asleep in the study area. I forced myself to go to school. I didn’t get teased but I found it very frustrating.”
Between February and June last year Rhoda went through a period of suffering from a number of episodes, which left her unable to spend enough time on her studies.
She was dismissed from her course in July last year when she failed to show for a number of exams and missed coursework deadlines because she was asleep.
After a visit to the GP, in May last year, Rhoda was sent to see specialists doctors at St Thomas’ Hospital and finally got her diagnosis in September.
“It was when I was missing work that I went to my GP. I tried to explain to uni that I had a condition that was stopping me from doing work,” she said. “But because I wasn’t diagnosed until September I had nothing to back it up. I didn’t have enough credits to pass the year and I was dismissed.”
Rhoda last experienced an episode around three months ago when she slept for over 60 hours in just three days.
The psychology student typically snacks on junk food during nap breaks and often puts on weight during an episode.
People who suffer with Kleine-Levin Syndrome are known to grow out of the condition eventually, and Rhoda has learnt to manage her condition in adult life.
“I’m more aware of it now. I know when I’m going to have an episode,” she said. “It used to feel like I was in a dream. It’s such a surreal feeling. It feels like you’re not really there. This is just a hiccup in my life and I am just waiting until it fades out. I want to be taken serious in life and this isn’t helping.”
What is KLS?
According to KLS support UK KLS is a rare disorder characterised by recurrent bouts of excessive sleep associated with reduced understanding of the world and altered behaviour.
The charity says KLS usually starts in the teenage years but can occur in younger children and adults.
Each episode lasts days, weeks or months during which time all normal daily activities stop.
“Individuals are not able to care for themselves or attend school and work,” the site continues.
People with KLS coming out of episodes will have little or no memory of what happened during an episode, but between episodes they have normal sleep, understanding and behaviour.