Sleeping beauty
RAHNI SADLER: When she was 14, Alanna Wong suddenly felt sleepy.
ALANNA WONG: I don't feel good.
ALANNA’S MOTHER: What do you feel like, honey?
ALANNA WONG: I feel like I'm in a dream.
ALANNA’S MOTHER: You feel like you're in a dream?
RAHNI SADLER: Soon, Alanna would drift off to sleep. She wouldn't wake up for eight months.
ALANNA’S MOTHER: How does your head feel?
ALANNA WONG: It hurts.
RAHNI SADLER: She wasn't in a coma. She'd been struck down by Sleeping Beauty disease - one of the world's rarest conditions and most vulnerable are teenagers.
ALANNA’S MOTHER: I want you to get some rest, OK?
EMMANUEL MIGNOT: People can be completely normal and then switch to this state where the brain doesn't work at all and they sleep all the time.
ANALEIGH BRADBURY: It's like you're trapped in a nightmare you can't get out of.
ANALEIGH’S MOTHER: She would just sleep 22-23 hours.
RAHNI SADLER: For how long?
ANALEIGH’S MOTHER: 15, 16 days at a time.
ALANNA’S MOTHER: I'm sorry, you don't feel good. I love you, honey.
RAHNI SADLER: The Hawaiian island of Oahu. Here, time seems to stand still and time is something Alanna Wong has had stolen by this strange disease. You went to sleep on June 29 and you woke up in February?
ALANNA WONG: Yeah. Eight months straight and all that eight months is wiped out. Like, I have no memory of summer, spring or winter, part of winter. Whenever you think of Sleeping Beauty, you're thinking, "Oh, she's in a peaceful sleep." And that's not the case at all because when you're sleeping during an episode, you have nightmares,
you're frightened, you're scared.
RAHNI SADLER: How much of your life have you lost?
ALANNA WONG: I've lost about five years.
RAHNI SADLER: You're 22 years old and you've lost 5 years?
ALANNA WONG: Yeah.
ALANNA’S MOTHER: Shut your eyes...
ALANNA WONG: At 14, that was when I had my first major episode. I was at school...
and I fell asleep on the bathroom floor.
RAHNI SADLER: The illness comes and goes but when it strikes, Alanna has an uncontrollable need to sleep for at least 20 hours a day for weeks or months on end. She gets up briefly to eat and use the bathroom but still doesn't wake, remaining in a trance-like state.
ALANNA WONG: It's like I'm in a semi-conscious state.
ALANNA WONG: Like, I feel like my mind is trapped.
ALANNA’S MOTHER: You don't really remember the last four days?
ALANNA WONG: It's like, you know, if I appear to be awake, I'm not really awake. It's like my mind is still in an altered state, my mind is still in a sleep state. Doctors misdiagnosed me with depression and possible schizophrenia.
RAHNI SADLER: Her eyes may be open but Alanna is still very much asleep, unable to control her very strange behavior. What are you like when you're in an episode?
ALANNA WONG: I feel like I'm in a dream! When I am in an episode, I am very childlike. My head hurts! I act like a 3-year-old. Nobody likes me! I'm just...obnoxious, I have a very ravenous appetite, I'm always hungry. I could eat as much as three men, you know, in one day.
EMMANUEL MIGNOT: We eat enormous amounts of food that normally they don't eat. In some circumstances people have been reported to actually choke on food and actually die from trying to eat too much food, for example.
EMMANUEL MIGNOT: Yes. Do you think we are close?
MAN: No, I don't think we are close quite yet.
RAHNI SADLER: Stanford University's Professor Emmanuel Mignot is leading the search for a cure. If he succeeds, he'll be the Prince Charming of Sleeping Beauty disease but it's proving harder than anyone anticipated.
EMMANUEL MIGNOT: Yes, Kleine-Levin is a complete medical mystery. We think that probably there is an infectious trigger to it because very often patients start an episode by having some kind of cold-like symptoms -you know, stuffed nose, feel bad, and then, boom, they start an episode.
RAHNI SADLER: Alanna grew up in a close family. When she was 10, she began sleeping more than normal then the sleep episodes increased in frequency and duration.
ALANNA’S FRIEND: How are you feeling?
ALANNA WONG: I feel like I'm in a dream!
ALANNA’S MOTHER: It's taking over her life right now. This illness is so devastating because she doesn't have to get back once or twice or three times, but continually. She always does wake u and she always comes back. So...
RAHNI SADLER: Alanna's parents began videotaping her sleep episodes.
ALANNA’S MOTHER: Then you fell ill on the 27th, 28th, 29th, 30th.
RAHNI SADLER: Scientists suspect the disease has something to do with the hypothalamus - the part of the brain that controls the sleep, wake and hunger cycles. Because it's so rare, many sufferers remain undiagnosed, confused and searching for answers as to what's happening to them.
ALANNA’S MOTHER: It's not depression, it's not bipolar, it's not schizophrenia...
ALANNA WONG: Getting a diagnosis is half the battle. On average, it takes four years to get a diagnosis of KLS. Four years of not being diagnosed is miserable. Those are the toughest years.
ALANNA’S MOTHER: My heart just breaks for those children, for those people.
ANALEIGH’S MOTHER: She went back to bed and she slept for a week.
RAHNI SADLER: Not only have you been struck down by this weird illness but people didn't believe you.
ANALEIGH BRADBURY: Yeah.
RAHNI SADLER:16-year-old Analeigh Bradbury is one of only three known Australians diagnosed with Sleeping Beauty disease.
RAHNI SADLER: Are you frightened? You know it's going to happen again.
ANALEIGH BRADBURY: Very frightened because I don't want it at all. but it's something I have to live with so I'll put up with it.
RAHNI SADLER: Analeigh grew up in Tamworth with her mum, step-dad and two older brothers. There was no sign of anything unusual in Analeigh's life until the day she turned 13 and fell asleep at school. Then she fell asleep for a weekend and then a week.
ANALEIGH’S MOTHER: It was some three months later it happened again and this time it was, like, 10 days and we're, like - this time we saw a lot more of the different behaviour, the real childlike, 2-year-old.
RAHNI SADLER: And then at some point after that you began to think it was mental illness?
ANALEIGH’S MOTHER: We did. She'd have this real trance-like look where she could just stare straight through you, straight through anyone who come near her. It was like she was there but nobody was home.
RAHNI SADLER: During the times when the illness is dormant, Analeigh is like any other teenager. But without warning, it will hit...and more of her life will be lost.
ANALEIGH’S MOTHER: She's lost huge chunks of her life. She's missed parties, she's missed christenings, she's missed weddings. She's too scared to make long-term plans.
RAHNI SADLER: So she's basically sleeping her life away?
ANALEIGH’S MOTHER: Huge chunks of it.
RAHNI SADLER: So right now I'm talking to a polite, articulate, confident young woman.
ANALEIGH BRADBURY: Yep.
RAHNI SADLER: If we come back when you're in an episode, what will we find?
ANALEIGH BRADBURY: Just probably rude, non-talkative at all, non-smiling. Um...yeah, just not me at all.
RAHNI SADLER: Three weeks later we got a call from Analeigh's mum.
ANALEIGH’S MOTHER: Come and have some brekkie. Rahni's here. Take this out of your mouth. Do you want to come and have your lunch? Hmm? Go have some lunch?
RAHNI SADLER: Analeigh had no memory of me. She was listless staring and vacant.
ANALEIGH’S MOTHER: Want some lunch?
RAHNI SADLER: You really don't like the Sleeping Beauty tag do you?
ANALEIGH BRADBURY: No.
RAHNI SADLER: Why not?
ANALEIGH BRADBURY: I don't really feel very beautiful while I'm in it so I don't know why it should be called Sleeping Beauty.
ANALEIGH’S MOTHER: I've got it in here for you already.
RAHNI SADLER: Hello.
ANALEIGH’S MOTHER: Remember Rahni?
RAHNI SADLER: Remember me? Rahni? Hello. How you going? Don't remember me?
ANALEIGH’S MOTHER: Do you remember Rahni?
RAHNI SADLER: Not really?
ANALEIGH’S MOTHER: Remember Rahni came and spoke to us before?
RAHNI SADLER: No.
ANALEIGH’S MOTHER: Do you want sauce? On or plate? Can you use words?
ANALEIGH BRADBURY: No.
RAHNI SADLER: You did say that you wouldn't remember me. Having a good sleep?
ANALEIGH BRADBURY: Mum, I want a fork!
ANALEIGH’S MOTHER: You want a fork. I'll get you a fork.
RAHNI SADLER: She's acting like a surly teenager.
ANALEIGH BRADBURY: I don't like that sauce. I want barbeque sauce.
RAHNI SADLER: But it's the disease talking, not Analeigh.
ANALEIGH BRADBURY: I don't like it.
EMMANUEL MIGNOT: Most patients with KLS get cured eventually.
RAHNI SADLER: You don't remember at all, when we came around last time, we had a chat?
EMMANUEL MIGNOT: The problem is it usually happens around the age 30 so it's something that you are going to have to live for the long haul, for the entire adolescence and early adulthood, and it's really very, very difficult.
RAHNI SADLER: In Hawaii, years after finally being diagnosed...
ALANNA WONG: I don't like the noise!
RAHNI SADLER: Alanna is returning to her old self. The episodes are much less frequent. Now, she's catching up on the time she lost. Back in Australia, Analeigh has no idea when the illness will leave her and no idea when it will strike again. What are your fears for the future?
ANALEIGH BRADBURY: That I won't be able to get a job. I probably won't be able to follow my dreams.
RAHNI SADLER: You worry...
ANALEIGH BRADBURY: Yep.
RAHNI SADLER: Do you worry a lot?
ANALEIGH BRADBURY: Very, even when I'm not in an episode yet.
RAHNI SADLER: And you wonder why this happened to you?
ANALEIGH BRADBURY: Yeah.
END
