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Narcolepsy Navigators isn't just another podcast; it's a lifeline, a space where every story shared is a step towards changing the narrative around narcolepsy and idiopathic hypersomnia. Every episode is a peek into the lives of people navigating these conditions every single day. It's raw, it's real, and it’s about sharing stories that are way too important to miss. Because when we share, we have the power to change narratives – that’s our mantra, "Share a story to change a story." Everyday ...
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Narcolepsy 360

Wake Up Narcolepsy

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Every person diagnosed with narcolepsy embarks on a unique journey. There is no standard path, and for many, this proves to be among the most challenging aspects of the disorder. The Narcolepsy 360 podcast is a series of interviews that take a panoramic view of narcolepsy from the patient, caregiver, research and clinical perspective. Each conversation draws on experiences, best practices and expert advice from patients, parents and doctors. From the latest research to lifestyle tips, our po ...
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Welcome back to Narcolepsy Navigators for an eye-opening Season Two episode that dives into Tamby's journey with narcolepsy. In this heartfelt conversation, Tamby shares the raw reality of living with a misunderstood condition, navigating cultural misconceptions, and dealing with a whirlwind of challenges, from hallucinations to unexpected cataplex…
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Imagine being the youngest person ever diagnosed with narcolepsy at just three years old. Today, we're honoured to share the extraordinary journey of Mathilda, who has spent her life battling and thriving despite this complex condition. Joined by our Marketing Manager Iris, also living with narcolepsy type 1, we dive into Mathilda's world—from her …
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Join us on this heartwarming episode of Narcolepsy Navigators as we welcome our special guests Laura, an experienced animal foster parent from Illinois, and her narcoleptic dog, Toast. From being a breeder dump to becoming a beloved family member, Laura's journey is filled with challenges, adaptations, and the joy of raising a special needs pet. La…
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Experience the raw and transformative journey of Sarah Duncan, a courageous 29-year-old from Oregon, as she navigates the complexities of life with narcolepsy. From her pre-med college days filled with relentless fatigue to the frustrating misdiagnoses that dismissed her symptoms as mere anxiety and depression, Sarah's story highlights the often-ov…
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Can navigating life with narcolepsy impact your mental health and career? Join us on Narcolepsy Navigators as we explore these pressing questions with our special guest, Christine from Northern Ireland. You'll hear firsthand about her journey with narcolepsy type 1 and cataplexy, and how symptoms manifest uniquely in her jaw. We share our personal …
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Can you imagine trying to balance parenting, a creative passion, and a chronic sleep disorder? Join us on Narcolepsy Navigators as we explore this challenging reality through the inspiring life of Katie, a 30-year-old mom from South Dakota. Diagnosed with idiopathic hypersomnia (IH) in early 2022, Katie shares her journey of self-discovery and the …
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What if a sleep study could be the key to unlocking a 13-year mystery? Join us as we sit down with Henry from Queens, New York, who shares his deeply personal journey from experiencing his first symptoms of narcolepsy type 2 in 1996 to finally receiving a diagnosis in 2009. In this episode, Henry opens up about his trial-and-error process with medi…
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Nobody wants to embark on a journey across the turbulent seas of narcolepsy, but Natalie, a German mother and teacher, offers her moving story of doing just that. In her world, the emergence of narcolepsy in her late twenties was only the start of a journey marked by delayed diagnosis, developing cataplexy, and the struggle with ineffective sleep a…
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Discover the untold stories of life with narcolepsy as Sakhara Johnson joins us for an intimate conversation about her journey. We peel back the curtain on her day-to-day battles, from the initial misdiagnoses and the arduous path to discovering she had severe narcolepsy, to the ongoing struggles with treatments and their impact on her personal lif…
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This has been a highly anticipated episode for us here on the Narcolepsy Navigators podcast. Our hosts Kerly and Liz, are both taking on an incredibly deep and detailed dive into what living with Idiopathic Hypersomnia is really like and what is actually the difference between narcolepsy and IH? Chapters (01:57 - 05:22) Living With Idiopathic Hyper…
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In this engaging episode, host Kerly Bwoga chats with Liz, who shares her experiences of traveling with narcolepsy. Diagnosed at 18, Liz offers a candid look into the highs and lows of her travel adventures, providing valuable insights for anyone facing similar challenges. Chapters: Welcoming Liz and Introduction [0:00] Liz's Narcolepsy Diagnosis a…
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In this episode, host Kerly opens up about her narcolepsy journey. She discusses the early signs, the path to a proper diagnosis, the challenges she faced in her education, and her reasons for founding 'Narcolepsy Navigators' and 'Naps for Life'." Key Topics: Kerly's Experience with Narcolepsy and Cataplexy during Festive Seasons [0:00] The Road to…
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In this episode, our host Kerly Bwoga founder of Naps for Life Narcolepsy, delves into the complexities of narcolepsy and idiopathic hypersomnia. She discusses the symptoms, diagnosis, and treatment options for these sleep disorders, and highlights their impact on daily life. Key Topics Introduction to Narcolepsy Navigators [0:10] What is Narcoleps…
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Tatiana Maria Corbitt is a writer, artist and advocate. Tatiana is also a person with Type 1 Narcolepsy. In this episode, Tatiana and Claire discuss how the onset of her symptoms occurred after having the flu, while in the first year of college. She was diagnosed in 2017 while studying Applied Biological Studies. Since she experienced such a drasti…
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Thomas Gow is a Client Experience Analyst at TruDataRx. Thomas is also a person with Type 1 Narcolepsy and one of the inspirations to the creation of Wake Up Narcolepsy. In this episode, Thomas shares his experience of diagnosis at the age of 10 and how it wasn’t until he began to experience cataplexy that something bigger was going on beyond just …
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Tove Maren Stakkestad is a Danish American Writer and Blogger. She is currently sharing her experience of being a mom of 4 boys on her blog Mama In The Now. Tove is also a person with Type 1 Narcolepsy. In this episode, Tove reflects that she believes both her father and grandfather had narcolepsy and she had a sleepy childhood. When her mother too…
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Desireé Gorbea-Finalet is a person with Type 1 Narcolepsy and a student of Peace and Conflict Studies. In this episode, Claire and Desireé discuss how because she was labeled as a “good sleeper” as a young child that it may have contributed to a delayed diagnosis. Growing up in Puerto Rico, her family had a history of migraines so when she sought o…
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Dr. Grandner is the Director of the Sleep and Health Research Program at the University of Arizona, Director of the Behavioral Sleep Medicine Clinic at the Banner-University Medical Center, and an Associate Professor in the Department of Psychiatry at the UA College of Medicine, with joint appointments in the Departments of Medicine, Psychology (UA…
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Nicole Kenyon is a person with Type 1 Narcolepsy. She is also a multi-faceted narcolepsy advocate. She is an author of a memoir, a blogger, legislative advocate, personal trainer and the face of @fitniknarcoleptic Instagram where she shares workout routines. In this episode, Nicole shares how she struggled with excessive sleepiness most of her chil…
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Matthew Horsnell is a person with Type 1 Narcolepsy. He also is a multi-faceted narcolepsy advocate. He’s a speaker, a blogger, legislative advocate and narcolepsy support group leader. In this episode, Matthew and Claire discussed how becoming a dad pushed him to figure out his extreme daytime sleepiness that he dealt with throughout his childhood…
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Grace McGinnis is a college student studying Pre Med, a Division 1 college athlete and also a person with Type 1 Narcolepsy. In this episode, Grace and Claire discuss how Grace functioned as a “sleepy child” and how she was aware at a young age that her experience of sleepiness wasn’t normal. In her sophomore year of high school, her health and per…
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Dr. George Church is a Professor at Harvard & MIT, co-author of 580 papers, 143 patent publications & the book "Regenesis"; developed methods used for the first genome sequence (1994) & million-fold cost reductions since (via fluor-NGS & nanopores), plus barcoding, DNA assembly from chips, genome editing, writing & recoding; co-initiated BRAIN Init…
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Ginna Freehling is a neuroscience graduate and works in cancer clinical research at a biotech company. She is also a PWN. In this episode, Ginna shares how at the age of twenty she started experiencing symptoms of narcolepsy. In the process of trying to figure out what was going on, she was discouraged by her sleep specialist to not seek a formal d…
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Dr. Jennifer Gudeman is the Vice President, Medical and Clinical Affairs at Avadel Pharmaceuticals. In this episode, Dr. Gudeman and Claire discuss how Avadel Pharmaceuticals is seeking FDA approval for a once-nightly form of sodium oxybate (FT218) for the treatment of EDS and cataplexy in people with narcolepsy. Dr. Jennifer Gudeman was appointed …
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Travis Pavlicek is a husband, father of three and his son Cruz is a child with narcolepsy. In this episode, Travis shares how the onset of Cruz’s narcolepsy symptoms escalated within a span of 3 weeks. He details how his family struggled to find a doctor who knew what was going on with Cruz until finally they drove through the night to Mayo Clinic …
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Shamarla Morgan is a PWN and a narcolepsy advocate. In this episode, Shamarla shares how despite a self-diagnosis of narcolepsy type 1 within the first year of her symptoms, it took four years for her to receive a proper diagnosis. She experienced many frustrating interactions with doctors who didn’t take her communication about the disorder and he…
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Dr. John Peever is a professor of Cell and Systems Biology at the University of Toronto. In this episode, Dr. Peever shares why he got into narcolepsy and other sleep disorders research. He shares what his latest research is focusing on and how sleep research may influence future narcolepsy treatments. In his efforts through research and the Canadi…
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Ginger Zee is the chief meteorologist for ABC News, author, advocate and a person with narcolepsy. In this episode, Ginger shares her journey to being diagnosed with narcolepsy type 2. She also shares about how her mental health was affected by her drug prescriptions to her narcolepsy symptoms. Claire and Ginger discuss how she handles her narcolep…
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Belle Hutt is a fitness instructor, influencer, author, advocate and a pwn. In this episode, Belle shares her journey to being diagnosed with narcolepsy type 1. She also shares how she navigated her education while having narcolepsy and not feeling comfortable to disclose to her professors about it. Ultimately, she decided to get personal trainer c…
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Dr. Indra Narang is the Director of Sleep Medicine at the Hospital for Sick Children, in Toronto, Canada. She is also an Associate Professor at the University of Toronto. Dr. Narang specializes in many sleep disorders including pediatric obstructive sleep apnea and narcolepsy. She established the first pediatric narcolepsy clinic in Toronto which i…
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Emily Kreuziger is a mom, a professional snowmobiler and a person with narcolepsy. In this episode, Emily shares her long diagnosis process. After being diagnosed and learning more about narcolepsy, she realized her first symptoms started 10 years prior to her actual diagnosis. She also shares how she went from originally being diagnosed with IH, t…
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Gary Rutter is a sheep shearer, a dad and a person with narcolepsy. You read it right, a sheep shearer, a job so physical that you burn the same amount of calories as if you just ran a marathon. In this episode, Gary shares how he came about doing his unique occupation. He also shares that he was diagnosed with Type 1 Narcolepsy just a few years ag…
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