“It’s important to have people that understand and validate your feelings.”– Gina

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In the Know: A Narcolepsy Mini-Podcast

Tune in to hear different perspectives on narcolepsy.

Hear people living with narcolepsy talk about everyday life. Tackling subjects like “Navigating the Holidays” and “Being a Parent With Narcolepsy,” each episode will feature relatable, real conversations between two people living with narcolepsy. Listen as they share helpful tips and discuss managing their symptoms while navigating the ups and downs of life.

Matt and Sharon Podcast Image

Episode 1: Navigating the Holidays With Narcolepsy

December 20, 2021 | 18 min

December 20, 2021 | 18 min

Join Matt and Sharon as they discuss living with narcolepsy when life gets busy, particularly around the holidays. They share some of the challenges a hectic schedule can cause when managing the symptoms of narcolepsy and provide tips that may help others living with narcolepsy truly enjoy the livelier moments of the year.

Matt and Emily Podcast Image

Episode 2: Time to Speak Up – Part 1: Advocating for Yourself With Healthcare Providers

December 20, 2021 | 13 min

December 20, 2021 | 13 min

Emily joins Matt in a thoughtful conversation about the importance of being a self-advocate with healthcare providers. They share their own narcolepsy diagnosis stories and discuss the importance of speaking up at doctor appointments. Together, they urge others living with narcolepsy to find their voices and use them when it can matter the most.

Matt and Emily Podcast Image

Episode 3: Time to Speak Up – Part 2: Advocating for Yourself in Your Personal Life

March 8, 2022 | 15 min

March 8, 2022 | 15 min

Emily and Matt continue their discussion about being a self-advocate, focusing on speaking up at home. They open up about the fear of being judged by people in their lives and how vital it is to communicate how they feel in the moment. Together, they urge others to pen their own narrative in life and not let narcolepsy write their story.

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Read stories from people living with narcolepsy on Know Our Stories: A Narcolepsy Blog.

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Vivid dream-like experiences that occur while falling asleep or while waking up.

Occurs at night and includes dreams; muscles are not active to prevent people from acting out dreams.

People with type 1 narcolepsy can be diagnosed by their cataplexy or low levels of hypocretin (also known as orexin).

The cause of type 2 narcolepsy is unknown.

Restorative sleep state with decreased muscle tone.

Daytime and evening habits to improve sleep.

Brief total loss of voluntary muscle control when falling asleep or while waking up.

Also known as orexin, hypocretin is a naturally occurring chemical in the brain that helps maintain wakefulness and prevent non-REM sleep and REM sleep from occurring at the wrong time.

Unintentionally falling asleep due to excessive daytime sleepiness; “sleep attacks.”

The inability to stay awake and alert during the day; a constant need for sleep or unintentionally falling asleep.

A naturally occurring chemical in the brain that helps maintain wakefulness.

Vivid dream-like experiences that occur while falling asleep or while waking up.

Frequent shifts between different states of sleep and wakefulness at night.

Difficulty focusing or concentrating.

Brief loss of muscle tone with retained awareness, often triggered by strong emotions.

Performance of routine tasks without awareness or memory.