What is narcolepsy?

Narcolepsy is a disorder of excessive daytime sleepiness. There are a lot of other causes of daytime sleepiness, but this particular disorder involves problems with both dreaming and non-dreaming sleep. No matter how much sleep patients get at night, they can’t stay awake during the day.

How does that affect them?

Since it develops in their teen years, usually their grades go way down. They have trouble with their school work. They have trouble driving safely. Many employers get upset because they’re falling asleep on the job. Sometimes family members get upset because they can’t stay awake for a movie, or they fall asleep during dinner. So it’s very disruptive to the patient’s quality of life.

What does the drug modafinil do?

Modafinil is a new type of drug used to control daytime sleepiness. We’re not sure how it works. We know it works differently than the current treatments for narcolepsy, and we know that it is effective. It’s the most widely tested of any stimulant drug. We’ve been using drugs for narcolepsy since the 1920s, but no other study or any of the studies combined have involved 400 patients. This study involved over 400 patients from around the United States. They ranged from 18-year-olds to 65-year-olds. They were men, women, blacks, whites, Asians — a big mix of patients.

They have been on the drug now for about three years, and they’re still able to stay awake while they work, drive, go to school and do things with their families.

There are some side effects, but they’ve been predominantly very minor headaches that they may not even have needed to take any medication for. Some people had nausea when they first started it.

If this drug is approved, how do you think it will change the life of narcolepsy patients?

We know from the studies that when patients are treated with it, they begin to be able to drive safely again. They begin to do better in school. They begin to work. They have more energy. Their scores on quality of life rise much closer to the normal population. Without medication, they are as impaired as somebody with Parkinson’s disease or epilepsy. This offers them a chance to do normal activities again.

If somebody is getting a good night’s sleep, and they’re unable to stay awake, they should talk to their physician or a specialist in sleep disorders medicine. If you’re getting enough sleep at night as an adult, you should be able to stay awake. It is not normal to fall asleep at your computer screen or at your desk or in meetings. That means there’s something wrong, and somebody needs to take a look at it. Many of these disorders are treatable, and people feel better when they’re treated and able to stay awake again.

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