Undiagnosed sleep disorders cause millions of Americans to struggle for years

PORTER RANCH, Calif. (KABC) -- When it comes to getting enough sleep, nearly 70 percent of adults say they experience insufficient sleep at least once a month.

Many live with an undiagnosed sleep disorder, and it can take longer than it should to get properly diagnosed.

One nonprofit group is trying to raise awareness and connect people to the right resources.

Maha Awad of Porter Ranch struggled for decades to find out why she'd sometimes fall asleep in the middle of school or work.

"I'd heard of narcolepsy. You know you see kind of comical, overexaggerated portrayals in TV and film," said Awad.

She described a scene in the movie "Deuce Bigalow: Male Gigolo" where a person with narcolepsy fell asleep while eating her soup.

"When you see that, you think, 'I don't fall asleep, you know, in my soup. That can't be me,'" said Awad.

She said misinformed media portrayals made it harder for her to find an answer.

"I think sleep disorders are tremendously underdiagnosed," said Dr. Sam Kashani, a UCLA board-certified sleep specialist.

He said it can take years between the onset of symptoms to a diagnosis.

"That interval of time can be anywhere from five to 15 years, based on the data that we see," he said.

One out of three Americans reports having a sleep issue. One out of 2,000 have narcolepsy.

And the scary thing is many don't even know they have one.

"Very often they get misdiagnosed with depression. For example, they often get misdiagnosed as chronic fatigue syndrome," Kashani said.

After the proper testing, Kashani diagnosed Awad with narcolepsy.

"It was amazing. It was life-changing," Awad said.

Today Awad works with Project Sleep, a nonprofit dedicated to raising awareness about sleep health, sleep equity and sleep disorders. Their site offers different resources, including a sleep helpline, to connect people with more information.

"We all need to be armed with the information and find the specialist and take the time to figure out what is going to work for us," said Awad.

She added that even with the right diagnosis, treatment can be a long journey.

"My sleep hygiene, my practices. Everything you need to do to help yourself. You know, live the quality of life you want to live," Awad said.