Sophia Tydings, 23, and Jonatan Mitchell, 33, are best friends – but they’ve never actually met.
The pair bonded as they both have Kleine-Levin Syndrome (KLS), a rare disorder that can cause them to sleep for excessive periods of time, which is often referred to as ‘sleeping beauty syndrome’ – a label the pair reject.
They live more than 1,000 miles apart but enjoy daily video calls and support each other to deal with the ‘one in a million’ condition.
Jonatan, of Champlin, Minnesota, USA, estimates he has slept for four and half years since his first episode a decade ago.
His longest episode lasted for 15 months, in which he slept for up to 20 hours a day – and during another episode he slept through his closest pal’s wedding.
Aspiring architect Sophia, of Washington DC, Maryland, blames losing five jobs and a promising sporting career on KLS.
She said: ‘As sufferers, we know we’re smart and capable people, who are being deprived of being able to work by this horrible disease. Even when we’re not having an episode it still affects everything.
‘On average, each month, I will lose from three days to two weeks, because I will sleep for around 20 hours, but I also have episodes that can last up to two months.’
Her condition started when she was 10 and doctors initially thought it was a virus or an infection, but when she was 16 her sleeping episodes escalated until one lasted for two months.
‘I had the longest episode I’ve ever had. I missed two months of school and it took me about a month to get back to normal afterwards,’ she recalled.
‘It was a long and hard process coming out of that and acclimatising to normal life.’
A migraine specialist suggested she may have KLS, but as other medics deemed it too rare, her condition kept being dismissed as psychological and she was told to try meditation.
At 19, a sleep specialist told her that her symptoms fitted with the condition but she had to find a doctor who understood it to get a diagnosis.
Finally, at the age of 21, she sought help from a support group online and discovered a KLS specialist at a centre in Atlanta, Georgia, 600 miles away and flew there for an evaluation.
‘It’s a process of elimination, ‘ she said. ‘They had to make sure there were no underlying issues that could be causing my symptoms, so from when I was certain I had KLS at 19, it took almost three years to then get my diagnosis. There were a lot of stops and starts.
‘It was like validation for me, but also scary at the same time, because I was overwhelmed by the fact that it wasn’t going to go away and I was going to have to find a way to live with it. There’s no magic cure.’
According to the KLS Foundation, the rare and complex neurological disorder is characterised by recurring periods of excessive sleep, altered behaviour and a reduced understanding of the world.
It can cause cognitive abnormalities, hallucinations, odd behaviour, binge-eating and hyper-sexuality and affects around one in a million people worldwide.
‘I’ve tried different medications, one that seemed to help at first, then just stopped doing anything, but doctors are so far away from understanding KLS that it’s just a case of managing the symptoms,’ she said.
‘The hard thing is that I’m still so dependent on my parents. I’m desperate to get my independence and would love to become an architect one day. It’s something I’m really passionate about, but I know it’s on hold for now.’
But one of the things that has helped her is her friendship with Jonatan.
After meeting online in a Facebook group raising awareness of the condition, in January, they clicked and now video call each other every day.
Jonatan is equally delighted to be able to share his true feelings.
He said: ‘Sophia’s one of my best friends even though we’ve never met.
‘Our situations are different, but its impact on our lives is very similar. KLS takes over your whole life and it’s comforting and validating to find someone else going through it, as you can navigate it together.’
His experience with KLS started when he was 23 and at college studying political science, in the hope of working in the government one day.
He’d just started dating his now wife Danielle, 31, who works in tech insurance.
He said: ‘I was sleeping for 20 hours a day for two months. She would come over and she’d have to drag me out of bed.
‘I wasn’t able to go to class and would visit medics, but they told me it was a vitamin D deficiency. I had no reason not to believe them.’
He missed so much class, his financial support was stopped and he had to quit his studies.
The couple moved to the Minneapolis area with Danielle when he was 25 and saw a neurologist, who suggested he had KLS.
After a process of elimination, he was officially diagnosed at the end of 2013, when he was 26.
Unable to work and in debt from his college course, he spent years attempting to claim state security, but failed because of a lack of understanding of KLS.
‘I’m asleep for half the year, but there is still this misconception that it’s a choice to sleep for that time and that I could work full time,’ he said.
‘We have huge debts, because it costs money to get a diagnosis, but aside from the financial impact, I miss out on so many things in life.
‘I was an usher at my best friend’s wedding, but slept through the whole ceremony. I couldn’t remember any of it.
‘It’s hard for people to understand why they speak to you one day but then don’t hear from you again for three months. It’s a very isolating condition. It makes you feel very lonely.’
Jonatan’s episodes, which are normally twice a year, usually last for two to four months, during which he sleeps for 20 hours some days and between 14 to 16 hours on others.
‘I’ve had two mega episodes, one lasting 10 months and the other 15 months. I worked out I’ve been asleep for 54 months since my first episode, which is four and a half years,’ he said.
Now putting what energy he has into helping other KLS sufferers, by setting up the Facebook page KLS Space, Jonatan also tries to raise awareness of the little known condition.
‘I want people to know that there are so many other symptoms that go along with it and take their toll, including extreme hunger, headaches, sensitivity to noise and light, broken memory and paranoia,” he said.
‘It’s not just the sleeping, so the term ‘Sleeping Beauty syndrome’ really minimises it.
‘I’m a 33-year-old man, I’m not a sleeping beauty. That’s part of why it’s not taken seriously as a condition, because people can’t imagine it’s that bad, but it is. It’s a serious ‘life taking away’ thing.’
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