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FAQs

Is it possible to have Narcolepsy without having all of the symptoms?

Yes, some people have a full house of symptoms, while others experience only sleepiness. Since both the spectrum and severity of symptoms can vary considerably most people with Narcolepsy are impacted to differing degrees.

Are there different kinds of Narcolepsy?

Yes, there are two forms of Narcolepsy: Narcolepsy with Cataplexy (Narcolepsy Type 1) and Narcolepsy without Cataplexy (Narcolepsy Type 2). In Narcolepsy Type 1, an autoimmune reaction destroys the brain’s 70,000 orexin/hypocretin-producing cells.

Are people born with Narcolepsy?

No, people are not born with Narcolepsy. Usually, symptoms begin between the ages of 10-20 years although it can begin in very young children.

How common is Narcolepsy?

Narcolepsy affects about 1 in 2,000 people – over 200,000 Americans and 3 million people worldwide. In other parts of the world such as Japan, Narcolepsy appears as frequently as 1 in every 500. Narcolepsy is not rare, but it is a severely under-recognized, under-reported and often misdiagnosed disorder that occurs equally in men and women.

What causes Narcolepsy?

Narcolepsy with Cataplexy is almost always caused by the selective and severe loss of brain neurons that make a neurotransmitter called orexin/hypocretin. Neurotransmitters are brain chemicals that neurons produce to communicate with each other and to regulate biological processes. Loss of orexin/hypocretin results in the inability to stay awake and regulate sleep.

The reason for such cell loss remains unknown, but it appears to be autoimmune in nature. That is, the body’s immune system selectively attacks orexin/hypocretin-containing brain cells.

Frequently, Narcolepsy onset follows a seasonal pattern of higher rates in spring and early summer, following winter upper airway infection season. Researchers are investigating a possible link between Narcolepsy onset and streptococcus infection, such as strep throat and the H1N1 influenza virus. In 2009-2010, one brand of flu vaccine used in northern Europe (“Pandemrix”) triggered a large increase in new cases of Narcolepsy, but this has not occurred with any other vaccines.

In very rare cases, Narcolepsy with Cataplexy can be caused by head injury, stoke, brain tumor or a genetic defect that prevents normal production of orexin/hypocretin molecules.

The cause of Narcolepsy without Cataplexy remains unknown, though it may be due to a partial loss of the orexin/hypocretin producing neurons.

Start Your Journey Here

Specific resources for newly diagnosed and loved ones.

Online Support Groups

WUN offers free, targeted online support groups to individuals with Narcolepsy and their families world-wide. Our programs are designed to bring together individuals who have been affected by the diagnosis of Narcolepsy and provide support and the community necessary to thrive. Individuals with Idiopathic Hypersomnia are also welcome to join these support groups.

Narcolepsy & Mental Health

Learn more about the connections.

Narcolepsy & Heart Health

Learn more about the connections.

Narcolepsy 101

We often hear from our community about the challenges of explaining Narcolepsy to others. Narcolepsy 101 is a series WUN created to easily share so that the hard work of explaining is in our hands and not yours!

What Does That Mean?

Terms to know when talking about Narcolepsy broken down in easy-to-understand ways.

Wake Up Narcolepsy In-Person and Online Conferences

WUN offers US & Canadian conferences and webinars for people with Narcolepsy, their families, educators, clinicians, and researchers. In these conferences and webinars, leading experts share their latest research on treatment options, the impact of Narcolepsy, comorbidity, and how to live a full life with Narcolepsy.

Screening Tools

These tools are often used by medical professionals. The purpose of putting them here is to help you understand your sleep and what you may be asked to fill out. These should not substitute for diagnostic tools and any questions or concerns should be directed to a healthcare professional.

Active Clinical Trial Information

NarcolepsyProject.com was developed for the benefit of patients and family members of those with sleep disorders. Their goal is to provide individuals with Narcolepsy and Idiopathic Hypersomnia (IH) with the latest information about current, actively enrolling clinical trials for Narcolepsy and IH, and provide a better understanding of these disorders and what treatments are available.

Sleep Habit Tracker

This resource is just a template and can be used for your own understanding of your sleep habits and for organizing this information to share easily when you have concerns. Some of the things we recommend documenting in the notes section are if you ate a large meal directly before bed, drank alcohol, slept in a different environment than usual or anything else that you think may affect your quality of sleep.

2024 More Than Tired – At the Heart of Narcolepsy

This is an educational program that provides tools and lifestyle tips to empower people living with narcolepsy to proactively manage their risk factors for heart diseases.

Age & Sleep

Wake Up Narcolepsy created a graphic from an AASM article in honor of World Senior Citizen’s Day 2023. Check it out!

Narcolepsy Toolkit for Women

Download the Society for Women’s Health Research’s Narcolepsy Toolkit to gain a better understanding of sleep disorders, treatment and care, and facts about Narcolepsy. The toolkit helps you learn how Narcolepsy affects individuals, specifically women, as well as their loved ones and provides information on which treatment options and resources are available.

Videos

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About WUN

Wake Up Narcolepsy is a 501(c)(3) nonprofit organization dedicated driving Narcolepsy awareness, education and research towards improved treatments and a cure.

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Narcolepsy 360 Podcast

Listen to our latest podcast or browse the archive.

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