PITTSBURGH (CBS) — Delanie Weyer is adventurous, fishing, traveling and skydiving. Like many 23-year-olds she wants to experience the world.
But at 18, something happened to her on a school trip that wouldn’t be explained until years later.
“When I was 18 was my first episode is what they call it. I was sleeping a lot, when I was awake I was delusional,” Delanie said.
Delanie barely remembers it. It would go on to happen another four times over the course of five years.
“I sleep anywhere from 15 to 20 hours a day. When I am awake, I’m very spacey, delusional, just not in touch with reality. I just have no motivation to do anything, very depressed feeling, really frustrated because I don’t know what’s going on,” Delanie said.
During an episode she only gets up to eat, drink and use the restroom. The last one lasted five weeks.
- For more on this story, visit CBS Minnesota
- Related Story: Local Teenager Suffering From “Sleeping Beauty” Syndrome (11/15/12)
Delanie has seen multiple doctors and therapists. All the while her mom worried.
“I’m the typical mom that would make her, force her to get up, and she’s very irritable, and again, the blank stare, and I questioned was she lying to me, was she being lazy, was she taking some kind of drug,” Jean Weyer said.
Dr. Ranji Varghese, a sleep specialist, diagnosed Delanie with Kleine-Levin Syndrome. And he answered questions that had been plaguing the Weyers.
“It is real. It is not precipitated by any psychiatric problems, it’s not precipitated by bad behavior, it’s not laziness. It is a brain dysfunction,” Dr. Varghese said.
Dr. Varghese said of the 500 documented cases, this typically happens in teenage boys.
And they can grow out of it. Delanie is the first Dr. Varghese has diagnosed. Kleine-Levin affects one in a million.
“We don’t know what really causes this. We have some ideas that it be some sort of inflammatory process in the brain but no one has been able to figure that out,” Dr.bVarghese said.
What Delanie has missed while in episode weighs on her mind.
“I’ve missed major life events. I’ve missed a Thanksgiving; I’ve missed Easter. I missed my grandpa’s 85th birthday. I missed my 21st birthday because I was in episode,” Delanie said.
On one occasion her mom had to fly to Wyoming to bring her home because she wasn’t cognizant to fly alone in episode. Still the diagnosis gave Delanie and her family hope.
“That’s what’s very encouraging now to know that if she goes through another episode, and it’s likely, that there is an end to the tunnel, that she will come out of it,” Jean said.
She has chosen to use her condition to help others understand it, including doctors.
It helps her make sense of missing out.
“I can educate them, this is what I have. My episodes are not a choice,” Delanie said.
There is no cure, but there is medication that can decrease the duration of episodes in intensity and number.
The next time Delanie has an episode, her mom will bring her to a sleep disorders center. There she will be monitored for a few days to learn more about what’s happening to her during the episode and so doctors can learn more about Kleine-Levin Syndrome.