Scientists Discover Narcolepsy Gene

More Understanding Needed

"A lot of the past clinical studies suggest that it's about six to seven years from the onset of symptoms to an actual diagnosis," said Dr. James Herdegen, medical director of the Sleep Science Center at the University of Illinois at Chicago.

During those six to seven years, Smith said many patients slowly lose control of their life, their jobs and their families.

"Without treatment, I would be confined to my house," she said. "I could not do anything or commit to anything at a particular time. I could accomplish things but not on anybody's schedule but my own."

"As a mother, it's a challenge to care for your children if you're not treated," said Smith.

While she is waiting for better treatment and early diagnosis for others with narcolepsy, Smith hopes to raise awareness in the public.

"The most important thing to a person with narcolepsy is to be around people who can understand and won't berate them," Smith said. "Employers, by and large, they don't want to have a person with narcolepsy on the payroll."

Smith said it is common to come across people diagnosed with narcolepsy whose families still believe they're just lazy. "They'll say, 'Oh, you need vitamins,' or 'You just need more motivation.'"

Smith is just looking for more hypocretin.

For more information about narcolepsy support groups and treatments, visit the National Organization for Rare Diseases, or The Narcolepsy Network.