Your Healthy Family

Oct 15, 2012 9:59 AM by Marissa Torres

Teenager battles rare sleeping disorder

It's not a shock to hear that most teenagers love to sleep, but this story takes sleeping to an extreme.

It's about a teenage girl from Ontario who's developed a rare sleeping illness called Kleine-Levin Syndrome. As a results, 17 year old Kaitlyn Terrana sleeps as long as 20 hours for days on end and says she doesn't remember much of the last two years.

"I sleep for 20 hours around the clock and when I'm awake; it's because my mom's waking me up to eat, to drink and to go to the bathroom," says Kaitlyn.
"I had no idea. I was so scared and.. It's upsetting because I missed by 16th birthday {and} my 17th birthday."

Kaitlyn's mom says it's like a walking zombie and adds, it has been difficult watching her outgoing, talking, youngest child start to disappear.

"It was hard," says Kathy Terrana, "nobody wants to see their child suffer."

Kaitlyn saw plenty of doctors, each with a different diagnosis. Some said depression, others even thought epilepsy.

It wasn't until Kaitlyn saw Dr. David Callen at McMaster Children's Hospital, that his resident raised the idea of a rare disorder. He says it was a classic history for Kleine-Levin Sydrome, also knowns as KLS, the so-called "Sleeping Beauty" Syndrome.

"When you think of Sleeping Beauty, you think of a nice princess lying there, but we're not like that. Our mood changes, we act out, we're nothing like ourselves."

Since being diagnosed last summer, Kaitlyn is once again taking classes at her high school, she got her driver's license, and is now part of new research into KLS at Stanford.

But the rest is hard to plan for. There is currently no treatment for KLS, nor are there tests to diagnose it. Doctors say in most cases, KLS can disappear, but only after several years of suffering with it.



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