A university student has told how she suffers from a rare syndrome which means she sleeps for weeks at a time – and even napped through her exams.
Rhoda Rodriguez-Diaz, 21, from Leicester, has ‘sleeping Beauty syndrome’ and can nap for up 22 hours a day, only waking in a dreamlike trance to eat junk food, drink and go to the toilet.
At its worst her sleeping episodes can last three weeks, and it 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 not to 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 – characterised by extreme tiredness – by her GP.
But it wasn’t until September last year that doctors finally discovered the psychology student had the one-in-a-million Kleine-Levin Syndrome.
Rhoda goes months at a time without experiencing an episode, but when they strike, 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 as a child, she was unable spend as much time with friends as she would have liked.
‘When I was four or five I would sleep for two or three weeks at a time and the doctors had no idea what it was,’ she said.
It was quite bad when I was a child. But then it didn’t happen again until I was a teenager.
‘When I was 15 or 16 I remember finding myself sleeping more and more. 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.
She added: ‘I was really into my sports but I couldn’t do as much as I wanted to because I was constantly tired.
‘I had to force myself to do every day activities and found myself mentally tired all of the time. When I wake up after a few days I feel normal again.’
‘My friends say they can tell when I have an episode coming on because my mood changes. I get worked up and my behaviour changes drastically.’
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’s not as bad as it used to be but I feel like I’m always playing catch up,’ she explained. ‘I was sleeping a lot in my first year too but because it didn’t have too much of an impact on my work I didn’t go to the doctors.’
She continued: ‘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.
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. She has now re-enrolled to resume her studies, and is sitting her second year again.
‘I missed so many exams,’ she explained. ’60 per cent of my course is exams and I missed half of them. It wasn’t my fault. But they said this is an ‘exceptional case’ so I am allowed to go back. It’s a big relief but I have to redo a lot of work I did in second year. It was difficult for me.’
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.’