TORONTO - There was nothing sweet about Kaitlyn Terrana's 16th birthday. And she has virtually no recollection of her last birthday, her 17th, either. She slept through both of them.

At a time when the teenager should be living each day to the fullest, she is trapped in a roughly six-week cycle in which she has no choice but to take to her bed, slumbering for about 10 days at a time.

Kaitlyn has developed an extremely rare condition called Kleine-Levin syndrome, or KLS, and it is stealing her life away.

"Kind of like the day before, I start feeling really tired and it's really hard for me to focus in class," she says from her home in Winona, Ont., near Hamilton. "And then after that, I'm just gone for 10 days. I have to sleep, I can't stay awake."

Her mom, Kathy Terrana, has to closely monitor Kaitlyn when she experiences one of these sleeping periods, saying her daughter can't be left alone.

"In the beginning of her episodes, she starts off being very, very tired," she says. "By late evening I can usually tell that, yes, she is starting an episode, because she doesn't talk, she doesn't converse with anybody.

"It's not very nice to say, but it's almost like she's a walking zombie, because when they're in their episodes they can be walking around but they don't know what's going on around them. So there's no empathy, there's no feeling whatsoever. She's in a complete fog."

Once an episode starts, Kaitlyn can easily sleep 20 or more hours at a stretch, says Terrana, who periodically wakes her daughter to take her to the bathroom, give her liquids and food.

But those meals must be carefully controlled because of another characteristic of Kleine-Levin syndrome — a voracious appetite.

"I monitor her food intake because otherwise she will walk to a cupboard and just binge on anything that's available," says Terrana. "It's like they're in a starving mode when they wake up. They just eat anything and everything in sight."

Kaitlyn knows her mom wakes her up to use the bathroom and to eat and drink, but she doesn't remember anything about those times away from her bed, even though she's supposedly awake.

"It's kind of like a dream," she says, struggling to put words to the feeling. "If you look back into your dreams, you remember certain things but not everything. It doesn't connect. That's how 10 days of my life is.

"So you look back and it's all foggy and it doesn't make sense."

Little is known about KLS because the condition is so rare. Doctors don't know what causes it and there are no treatments or cure.

The syndrome affects at least twice as many boys as girls and onset is usually during adolescence. Typically, the episodes last from 10 to 15 years, then disappear as mysteriously as they began.

Kaitlyn had her first attack two years ago when she was 15 and in Grade 10.

"Basically, I started feeling really weird. I felt really off. I couldn't focus in school," she recalls of that month-long first attack.

"Then out of nowhere I came out of it and I was back to normal. Basically, it felt like I was drugged for an entire month. I was confused about a lot of things. I looked at my (school) notes and my notes weren't written properly. And my notes are always neat and I always write everything down.

"Right away I knew something was really, really wrong. That's not me at all."

Initially, her mom thought her excessive sleepiness might be the result of depression. She tried to get her out of bed to go to school. She encouraged her to go out with friends.

"I didn't know what she had. I thought she just didn't want to talk," she says.

Terrana took her daughter to a therapist. She was also seen by doctors, who diagnosed her with partial complex seizures, one of the neurological conditions that has characteristics that mimic but don't fully match KLS.

She was prescribed a number of drugs — antidepressants as well as sleep and antiseizure medications — but they made Kaitlyn worse, her mother says.

It wasn't until she saw Dr. David Callen 18 months after her first episode that Kaitlyn got her KLS diagnosis.

"There's a couple of reasons why it's so difficult to diagnose, first because it is so rare, it's only like one in a million," says Callen, a pediatric neurologist at McMaster University's Children's Hospital in Hamilton.

"And secondly, there are no diagnostic tests, so we can't do an MRI and say 'Oh yeah, you have Kleine-Levin syndrome.' We can't do blood work and say 'Oh, yeah, you have the factors associated with this.' There have been tests that have been looked at, but there really is nothing that has been shown to be useful in actually making a diagnosis."

Callen says the diagnosis is based on a combination of specific symptoms that occur with excessive sleepiness, among them compulsive eating, cognitive and mood disturbances or hypersexuality, the latter mostly experienced by males with the condition.

While some patients recall having had a flu-like illness before their first episode, Callen says there is no evidence to support a theory that KLS might be an autoimmune disorder.

The syndrome's cause and its decade-plus duration remain a mystery.

"Often these episodes cease in their third or fourth decade of life," he says of those afflicted. "It can be a long time and the episodes can last for days and they are very disruptive."

Indeed, one of Kaitlyn's biggest worries is that she is missing so much school. This semester she is taking only a couple of Grade 12 classes and has given up the idea of going to university next year along with her classmates.

"It's affecting my schooling greatly because even though the school tries to accommodate me as much as they can, it's still difficult for me because I miss 10 days at a time and I have to catch up on what I missed plus the lessons I'm learning in class," she says.

"By the time I get caught up, it happens again, which is very stressful."

Kaitlyn's dream is to work in the health-care field in some capacity, and she has no idea if or when she will be able to realize that ambition.

Her social life is also tenuous. Never knowing when she will have an episode meant not signing up for a class trip to Montreal, and she had to turn down a friend's invitation to go to Cuba early next year.

While she has a group of supportive friends, including a boyfriend, she says she has lost several friends because of her illness. She has even been bullied online by one former friend who accused her of faking KLS to get attention — a charge for which there is no evidence, Callen confirms.

"It's really hard for me," Kaitlyn says, fighting back tears . "I try so hard to persevere, but I just keep getting brought down by this."

Even so, she is trying to raise awareness of KLS and to raise money for research being conducted at Stanford University in California.

"I'm not doing this for myself. I'm doing this for the next batch of people who get diagnosed with KLS, so they know they're not the only ones out there with it," says Kaitlyn, who was contacted by a Hamilton man with the syndrome after her story ran in a local newspaper.

That article also mentioned that KLS has been dubbed "Sleeping Beauty" disease, a moniker some readers took umbrage with, given how it affects young people's lives.

"It doesn't bother me," Kaitlyn says of the name. "It's just the fact that it's not a pretty syndrome.

"When you think of a Sleeping Beauty, you think of like a princess. And we're nothing like that when we're in that state."

———

Kaitlyn would like to hear from other KLS patients or their families. She can be contacted by emailing: kaitlyn_terrana_13@hotmail.com

Related on HuffPost:

Loading Slideshow...
  • Sleep Paralysis

    If you've ever drifted off to sleep or just woken up from sleep but were unable to move any part of your body -- spurring a sense that you are frozen in your bed -- you may have experienced sleep paralysis. Sleep paralysis is more common in the seconds to minutes when we're first waking up, whether in the morning or in the middle of the night, Gehrman said. When we are in REM sleep, our muscles are paralyzed so that we don't act out our dreams. But with sleep paralysis, a part of the brain wakes sooner than the rest, giving a sense of wakefulness and alertness -- even though the body's muscles are still paralyzed, Gehrman explained. However, <a href="http://www.stanford.edu/~dement/paralysis.html" target="_hplink">sleep paralysis isn't dangerous</a> despite the unsettling feeling experienced by people who have been through it, according to Stanford University. To decrease the number of sleep paralysis episodes you have, stress reduction, getting enough hours of sleep a night and making sure you have a good sleep schedule could help.

  • REM Sleep Behavior Disorder

    Opposite to sleep paralysis, REM sleep behavior disorder occurs when your brain is in REM sleep but your muscles are acting out your dreams, Gehrman explained. WebMD explains the <a href="http://www.webmd.com/sleep-disorders/guide/rem-sleep-behavior-disorder" target="_hplink">signs of the disorder</a>: <blockquote>Dream-enacting behaviors include talking, yelling, punching, kicking, sitting, jumping from bed, arm flailing, and grabbing. An acute form may occur during withdrawal from alcohol or sedative-hypnotic drugs.</blockquote> Stanford Sleep Disorders Clinic sleep specialist Tracy Kuo, Ph.D., told Everyday Health that this <a href="http://www.everydayhealth.com/sleep/other-disorders/REM-behavior-disorder.aspx" target="_hplink">disorder could potentially be violent</a>, especially if the person is kicking or punching his or her self or partner while sleeping. "Without treatment, it tends to get worse over time," she told Everyday Health. However, there are medications a person can take to help people relax their muscles when they sleep so that they <a href="http://www.everydayhealth.com/sleep/other-disorders/REM-behavior-disorder.aspx" target="_hplink">don't have any muscle activity</a> when they are in REM sleep, Everyday Health reported. REM Sleep Behavior Disorder has also been linked to <a href="http://www.webmd.com/sleep-disorders/guide/rem-sleep-behavior-disorder" target="_hplink">neurodegenerative diseases</a> like Parkinson's disease and multisystem atrophy, and seems to occur several years before these diseases, WebMD reported.

  • Sleep Walking And Talking

    Similarly to sleep paralysis, sleep-walking and sleep-talking occur when part of the brain is awake but the rest of it is asleep, Gehrman said. "With sleep-walking, people are mostly asleep but you're engaging in what are usually kind of basic routine behaviors," Gehrman said. "So typically, people sleep walk and go to the bathroom, or go down to the kitchen and get something to eat, but it's all usually very routine." Because sleep-walking and sleep-talking occur in non-REM sleep, since non-REM sleep only produces bland, boring dreams, whatever the person is saying or acting out is not related to what they may actually be dreaming about, he said. However, Gehrman said that there is not yet a clear answer as to why we say or act out the things we do when we are sleep-walking or sleep-talking. Sleep-walking isn't inherently dangerous, but if a child is prone to sleepwalking, Honaker recommends that parents take safety precautions by locking windows, putting safety latches on doors, etc., so that sleep-walking children don't accidentally hurt themselves.

  • Bedwetting

    Bedwetting, also known as enuresis, is defined as involuntary urination by a child who is older than age 5 or 6 (either in the day or night), according to the A.D.A.M. Medical Encyclopedia. Sarah Morsbach Honaker Ph.D., a pediatric sleep psychologist at the University of Louisville, told HuffPost that bedwetting is very common in children, and that most kids outgrow it as they get older, many times without any intervention. Honaker said a possible cause for bedwetting is maturational delay, meaning a child's body hasn't yet matured to maintain bladder control throughout the night. "You wouldn't expect a 2-year-old to be dry throughout the night," Honaker told HuffPost. "For some kids, this ability matures later than others." In addition, some kids may just have a lower arousal threshold, meaning that it takes more to rouse them from sleep if their bladder is full, she said. "Because enuresis is outgrown, there's a tendency in some cases for healthcare providers to make the decision not to treat it," Honaker said. "However, there has been research to suggest it impacts self esteem and can have social consequences." Because of that, she suggests that kids whose lives are strongly impacted by bedwetting to consider an intervention like a bedwetting alarm, which senses moisture and goes off so the child wakes up to go to the bathroom.

  • Night Terrors

    Night terrors, also known as sleep terrors, occur more often in children, who tend to outgrow them by adolescence, Honaker said. She also clarified that they are not the same thing as nightmares. "When a child has a sleep terror, they're asleep, so typically what will happen is they will be inconsolable, seem very upset, crying, screaming, and don't even seem to recognize the parent when the parent comes into contact with them," Honaker said. Sleep terrors can go on from 2 minutes to 20 minutes or longer, and they can be very scary for parents, she said, but parents should rest assured that sleep terrors are not at all harmful for the children. "They're asleep, so there's no lost sleep, and we don't see them feeling fatigue the next day," she said. "There's typically no recall, and that's a hallmark with a sleep terror." Honaker said that anywhere from 1 to 6 percent of children will experience a sleep terror, with the typical age of onset being between 4 and 12 years old. For parents, the best thing to do is <em>not</em> wake the child up -- "it can actually make the episode worse because the child doesn't see them as a parent," she said.

  • Teeth Grinding

    Teeth grinding, also known as bruxism, occurs when you <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002386/" target="_hplink">slide your teeth back and forth</a>, and can occur in both the day and night time, according to the A.D.A.M. Medical Encyclopedia. It can be annoying to sleep partners, and can even lead to joint pain or damage in the area. Teeth grinding is a result of any number of factors, including stress, misaligned teeth, ability to relax and sleeping habits, the A.D.A.M. Medical Encylopedia reported. Gehrman said that sometimes, lowering stress and anxiety can help to reduce teeth grinding at night. To manage teeth grinding -- though it isn't a cure -- people can go to their dentists to get a mouth guard to protect their teeth at night.

  • Exploding Head Syndrome

    Exploding head syndrome is definitely more unusual than some other sleep occurrences like sleep-walking or sleep-talking, Gehrman said. "From descriptions, it's this bizarre experience that it does feel like your head is exploding" because of a loud noise going off in the head, Gehrman said. However, he noted that it's not dangerous. The American Sleep Association <a href="http://www.sleepassociation.org/index.php?p=explodingheadsyndrome" target="_hplink">describes it as</a>: <blockquote> ... Similar to a bomb exploding, a gun going off, a clash of cymbals or any other form of loud, indecipherable noise that seems to originate from inside the head.</blockquote> Gehrman said that there is little research on the phenomenon, but it seems to be a very extreme variation of hypnic jerks -- those weird leg jerks that occur when you're first falling asleep. The American Sleep Association reported that people over age 50 and women are more likely to experience the phenomena, and that it's asso<a href="http://www.sleepassociation.org/index.php?p=explodingheadsyndrome" target="_hplink">ciated with high stress and fatigue</a>.

  • Related Video