Question: What is narcolepsy?
Shelby Harris: So, narcolepsy is a disorder that affects many different areas of life. So in typical patients with narcolepsy, they have something called “excessive daytime sleepiness.” So, they’re very sleepy during the day. Yet, at night, they’re still sleepy, but their sleep is very broken. So we’ll see patients with narcolepsy, you’ll see the classic narcolepsy with cataplexy, as we call it. When patients will have – they’ll just fall asleep, right away. So, if there’s a loud noise, a strong emotion, happiness, anger, fear, can actually make their bodies shut down and have muscle weakness that they fall asleep. Other patients it’s not that severe. They’ll have a lot of muscle weakness.
I have one patient who used to hear a loud noise when she was at work and her right side of her face used to become numb and weak. So there are a lot of symptoms that happen with narcolepsy. We’re not fully – we’re starting to learn what’s causing it. There’s something in our bodies in our brain called hypocretin, and they’re seeing that people who have cataplexy, so that muscle weakness, those patients tend to have a lack of hypocretin and it decreases even more as they age. So we don’t really know why it’s happening, but that’s one theory as to what may be what’s going on.
Other things that happen in narcolepsy is they tend to have very vivid dreams. So when they do fall asleep, when they take those really brief naps that are very refreshing, so even a five minute nap is completely refreshing for these patients, but the minute they go into sleep, they dream and they have very vivid dreams during the day and night. More so then most patients do.
Now narcolepsy is really hard though because they’re very tired during the day, they’re sleepy during the day and it’s managed mostly with medications. So we use medications to help them sleep better at night and to stay away during the day. But there are behavioral things you can do also by changing diet, exercise, having an actual nap schedule. But it can be difficult because patients want to work. They want to have functional lives and to have a discussion with an employer about being able to take a quick nap, it’s refreshing for them to be more energetic during the day, it’s actually a real problem so sometimes we’ll have to work with employers to help them see that narcolepsy is a real diagnosis.
Families will often call patients lazy, so it’s really a disorder that affects not only the patient, but marriages, families, workplaces, it can really affect a lot of people.