South Plains narcoleptics refuse to sleep their lives away

LUBBOCK, TX (KCBD) - It's a dangerous condition that a Lubbock sleep expert says affects about 200,000 people in the United States, with only 50,000 diagnosed.

Known as narcolepsy, it causes irresistible sleep attacks that cause patients to fall asleep in the middle of a task - while at their desks or even while driving.

Jacob Chavera is a 10-year-old from O'Donnell who has recently been diagnosed with this condition, after his second grade teacher, Crystal Saenz, noticed a problem during class.

"He could just fall asleep at any given moment," Saenz said. "He would just be asleep at the desk, drooling, and I would sometimes go slam the desk to startle him a little…and nothing."

Saenz knew Jacob needed help.

"He could just fall asleep standing there beside us and just fall asleep," she said, "so that's when we started talking to Jessica about it."

Jessica Chavera, Jacob's mom, said he would go to bed at 9 p.m., and still fall asleep in class.

"I was like, I don't know what's wrong," Jessica said.

The sleep attacks only got worse.

"One day I had visitors come to the house," Jessica said, "and they were like, 'Jacob is asleep under the truck outside.' And we're like, 'What?!'"

But to Jacob, the drowsiness just feels normal.

"When I get sleepy, I like try to find a good spot or I don't," he said. "I just go to sleep. When I get sleepy, my body just shuts down and then it'll shut down anywhere."

Worried about his safety, Jessica took Jacob to a sleep study.

"They put some little wires in my nose," Jacob said, "and it didn't feel so good."

He still fell asleep, though, and woke to a diagnosis that medical director of Covenant Sleep Lab, Dr. Christopher Rose, says can be devastating.

"Narcolepsy we think is an autoimmune disease. We think that antibodies attack certain areas of the brain and prevent the brain from producing a chemical called orexin," Rose said. "Orexin keeps us awake, and if you don't have that orexin, then you have these sleep attacks."

That means Jacob counts sheep in less than a minute, a stage that takes most people five to ten minutes.

"Even if he goes on a bike ride, his dad took a picture of him falling asleep on his bike," Jessica said. "It worries me now because I have to think, will he ever have a normal life? Will he learn to drive a car? Will he be able to drive a car by himself, or go to school?"

These are questions that Dr. Rose's other narcoleptic patient, 74-year-old James Dubose, can help answer. He said he barely survived that stage of life when he did not know about his disease.

"I kept leaving people's houses and driving home," he said, "and not remembering anything in between."

Dubose's wake-up call came after he lost his driver's license and several friendships.

"They would come over and visit," he said, "and I would sit there and go to sleep."

He finally found out why at 28 years old.

"They said, 'This is what you've got,'" Dubose said. "It can be treated with medication, and I said, 'It's not a problem then, is it?'"

Not with the occasional nap, he said, and a bingo game to stay active.

"You don't want to be sleeping playing bingo," Dubose said, "because you may miss a number."

That's the advice he gives to Jacob, to dream with his eyes open.

"We have to do what we can do," Dubose said.

Jacob has found that the combination of medication and naps have helped his performance at school and at his baseball games.

"People think that you're lazy and you're not active," Jacob said. "I think I get to go and play as much as the other kids."

Dr. Rose said constant sleepiness/drowsiness during the day is not normal to experience. To contact a sleep specialist for any questions, visit http://www.covenanthealth.org/Contact-Us/Facilities/Sleep-Centers.aspx

Copyright 2016 KCBD. All rights reserved.