Everybody has a story
Brad wadsworth has a rare condition known as ‘sleeping beauty syndrome’.
Six years ago, about halfway through year 12, I fell asleep at my desk in class. I was tired, but it was a different sort of tired. I didn’t think too much of it at the time, but that afternoon when I got home, I fell asleep while working on something on my laptop. My mum remembers taking a photo and laughing it off – you know, “Typical teenager, too many late nights.” But I stayed like that for about 10 days. I had another episode during exams, but because we didn’t have a name for what was wrong, I couldn’t get any special consideration for my bad marks.
I went to a couple of different sleep specialists who did sleep studies on me, then I had an MRI and an EEG and all these other tests. They all came back normal. One sleep specialist actually said, “Sorry, I can’t help you anymore.” After that, I went to another who still didn’t know what was wrong, but took the time to try to help me. One day, Mum was googling my symptoms and found they matched with something called ‘Kleine-levin syndrome’, or ‘KLS’. She took that information back to the sleep specialist, who said, “I’ve heard of that, but I don’t know anything about it.” His knowledge was so limited because it affects less than one in a million people. There are only 11 known cases of the neurological disorder (sometimes called ‘Sleeping Beauty syndrome’) in Australia, so doctors don’t know anything much about it. To be honest, if I was going to be one in a million, I’d have preferred to win Tattslotto or something.
It’s hard to explain what it feels like when I’m having an episode. I sleep for about 20 out of 24 hours, but it’s not proper sleep. When I wake up, I don’t feel refreshed – I feel like I’ve got to go straight back to sleep. Even when I’m awake, I’m not really ‘there’. People describe it like I’m sort of in this zombie state. It’s almost like I’m braindead. My eyes will go all glazed, and my mum and girlfriend say it looks like I’m staring into space when I’m talking to them. I can’t communicate with anyone; I can’t do anything. I know what’s happening, but I can’t do anything to stop it.
An episode usually lasts around seven to 10 days, then it takes about a week to get back to 100 per cent, because, being asleep all the time, I’ve lost a lot of energy and strength. Other people have episodes that last a lot longer – sometimes even for months – so in terms of the severity, I feel quite lucky. There aren’t any real warning signs, it just hits out of the blue. I maybe have a day’s notice, but it’s hard to tell because being tired isn’t necessarily a sign that it’s coming on. It’s not like narcolepsy, where you fall asleep instantly.
A few times I’ve had an episode after I’ve had a bit to drink, but other times I’ve drunk nothing at all and I’ve still fallen sick. It’s just random; I don’t think there are any triggers. I’m not a very stressed person, so it doesn’t seem to be stress-related. Nobody really knows what causes it. That’s frustrating, because I can’t plan ahead; it makes me feel like a bit of a burden. I still live at home, and my mum will take days off work to make sure I’m eating properly during an episode. I just wake up to eat, go to the toilet and shower. I get all these cravings for junk food, like lollies and chocolates. I think that’s quite common for people who have KLS.
When I got diagnosed, it was a bit of a relief to be able to put a name to it. I felt less alone knowing that other people are experiencing the
same thing, even if there aren’t many of us. There’s a Facebook group where people with KLS and their parents can ask questions and get support, but because it’s so rare, everything’s a bit unknown. It’s hard, because all we have is a name, and nobody can really help us. All that really seems to be known is that there’s no cure; most people who get it are teenage males; and it’s possible to grow out of it – some people have it until they’re 30 or 40, then stop having episodes. On the Facebook group, people talk about different medications they’ve tried. I’ve tried a few different things, like lithium tablets, but I’ve still had episodes while taking them, so it doesn’t seem like they’ve really helped.
Over time, I’ve gotten to know how to cope with it all a little better. I know what’s going on, and I know it’s going to go away eventually, so I just have to cop it for a bit till then. I’ve got a good support crew around me, like my parents and my older sister, who’s a nurse. My girlfriend has been with me since the start, so she’s been really good about it all. She tends not to spend too much time with me when I’m sick, because it’s hard for her, which is understandable. But she knows it doesn’t last forever and I’ll be back to normal soon. She also tells my friends if I’m sick so they don’t get annoyed if I don’t reply to messages or see them! It’s nice to look at my phone when I get better and see messages of support.
The majority of people don’t get it, though. A lot of people say things like, “I wish I could sleep like that! I could do with a two-week sleep.” My dad was telling his boss about my illness, and he responded, “Yeah, my son stays up late playing video games and then has to sleep all the next day.” People don’t understand that having KLS is not like that at all.
For the past three years, I’ve worked in property development sales. I started my current job about eight months ago, and I hadn’t told them about my illness because it had been ages since my last episode. Then one day I fell sick and thought, “Right, I obviously have to tell them now.” They were amazing about it – the manager and general manager were so supportive. That made me feel much more comfortable sharing everything I was going through with them. I do feel bad, though, because I don’t want to put everyone out if it’s a busy time of work or something. There have been a couple of times when I’ve fallen sick around people who wouldn’t normally see me like that, but I think it’s good, because otherwise they wouldn’t have any idea what is actually going on.
It does feel like life goes on pause sometimes. I used to play cricket, but I had to pull out when the KLS came on. Once, my girlfriend and I booked a holiday a long time in advance, then I was worried the whole time that I was going to get sick and ruin everything. It’s always at the back of my mind. I went to uni for a semester, studying part-time, but had an episode in the middle of exams, so I thought I should probably defer. If I wasn’t sick, I probably would have gone to uni, but I’m happy with the industry I’m in now. I don’t feel like my illness has impacted me too much, but you never know what could have been.