Narcolepsy Navigators Podcast

Kerly Bwoga
  • 0.0 (0)
  • SOCIETY & CULTURE
  • MONTHLY

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, idiopathic hypersomnia and Klein-Levin syndrome.  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 life with these conditions is an unseen odyssey, an intricate dance of challenges that most can't fathom. But we're here to bring those stories into the light, to give a voice to the silent struggles and the victories that often go unnoticed.It's about time the world saw beyond the misconceptions and understood the full impact these conditions have on someone's life.

  1. S4E6:Building a Life That Works With Your Energy: Cloud’s Journey

    7 MAR

    S4E6:Building a Life That Works With Your Energy: Cloud’s Journey

    Leave a review! In this episode of Narcolepsy Navigators, we sit down with Cloud, a narcolepsy advocate from San Diego living with Narcolepsy Type 1 with cataplexy. After years of struggling with unexplained exhaustion and symptoms that began in adolescence, Cloud was finally diagnosed at age 30. But diagnosis wasn’t the end of the journey — it was just the beginning. For nearly a decade, Cloud intentionally stepped away from traditional schedules to learn how their body actually functions with narcolepsy. That meant building a life around energy levels, sleep cycles, and personal boundaries rather than society’s expectations. Now, ten years later, Cloud has reentered the workforce and is navigating what it means to balance work, health, relationships, and identity with a neurological sleep disorder. This conversation is honest, thoughtful, and deeply relatable for anyone learning how to build a life around chronic illness rather than fighting against it. Topics Covered • Recognizing narcolepsy symptoms as a teenager  • Receiving a diagnosis at age 30  • Why Cloud stepped away from traditional work for years  • Learning to live on your body’s schedule  • Reentering the workforce after a decade  • Balancing friendships, family, and fatigue  • The mental load of narcolepsy  • Adjusting medication and nap schedules  • Why understanding your body is essential Why This Episode Matters Narcolepsy isn’t just about sleep attacks. It affects careers, identity, relationships, and how people move through the world. Cloud’s story highlights the importance of self-awareness, boundaries, and designing a life that works with your condition instead of against it. About the Guest Cloud lives in San Diego and was diagnosed with narcolepsy with cataplexy at age 30 after experiencing symptoms since adolescence. Over the past decade, they have focused on understanding how to live well with narcolepsy and are now exploring new ways to reconnect with work, community, and purpose. Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast ***If you find these symptoms relatable, please seek medical advice.***

    49 min
  2. Medical Series S1E4:Hot Flashes, Anxiety, Insomnia-The Menopause Sleep Crisis: Insights with Dr. Caitlin Chasser

    1 MAR · BONUS

    Medical Series S1E4:Hot Flashes, Anxiety, Insomnia-The Menopause Sleep Crisis: Insights with Dr. Caitlin Chasser

    Leave a review! Hot Flashes, Anxiety, Insomnia:The Menopause Sleep Crisis: Insights with Dr. Caitlin Chasser  Narcolepsy Navigators launches its Medical Series on narcolepsy and overlooked comorbidities, with host Fred (undiagnosed sleep disorder), co-host Bernadette (narcolepsy type 1), and guest Dr. Caitlin Chasser, a family doctor specializing in sleep and menopause. Dr. Caitlin shares how her own insomnia and premature menopause led her to focus on sleep, emphasizing holistic tools (meditation, breath work, body scans), exercise (especially resistance training), and personalized sleep environments to reduce hyperarousal. She discusses common menopause-related sleep problems (poor sleep quality, insomnia, obstructive sleep apnea, restless leg syndrome linked to iron deficiency), the impact of alcohol, naps, and bedtime routines, and notes CBT-I as the gold-standard insomnia treatment. The episode also covers melatonin’s limited indications, hot flushes and temperature regulation, libido changes, and resources from The Sleep Project, plus podcast Patreon/merch announcements. About The Guest Dr Caitlin Chasser is a GP and Sleep Consultant with a special interest in women’s health, particularly how sleep is affected by menopause.She is a co-founder of The Sleep Project, a doctor-led organisation helping people of all ages improve their sleep through practical, science-backed programmes. Caitlin has over 20 years of experience supporting women to feel better, sleep better and take back control of their health.She specialises in Cognitive Behavioural Therapy for Insomnia (CBT-I), the most effective treatment for long-term sleep difficulties, and takes a holistic, compassionate approach to sleep and wellbeing. Caitlin is passionate about making good sleep accessible to all — especially during life stages like menopause when sleep can often suffer.  00:00 Medical Series Kickoff 01:18 Meet the Hosts and Guest 02:43 Dr Caitlin Origin Story 04:26 Holistic Sleep Foundations 06:54 Exercise and Sleep Quality 09:05 Menopause Sleep Changes 10:28 Melatonin Myths and Uses 14:54 Menopause Sleep Changes 15:56 Menopause Insomnia Playbook 21:28 Sleep Safety and Hyperarousal 25:28 Wind Down and Mind Quieting 27:49 Breathwork Sleep Hack 28:45 Tools for 2AM Wakeups 29:52 Sports Body Scan Story 31:35 Military Body Scan Explained 32:28 Menopause Sleep Disruptors 34:24 Hot Flashes and Temperature 36:52 Libido Sleep Connection 38:32 Comfort and Hormone Options 40:51 Menopause Surprise and Support 44:25 CBTI Works and Next Steps 46:58 Why the Sleep Project Started 49:15 Wrap Up and Res Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast ***If you find these symptoms relatable, please seek medical advice.***

    52 min
  3. Medical Series S1E3 : Sleep Affects Everything: A Neurologist Breaks It Down”

    9 FEB

    Medical Series S1E3 : Sleep Affects Everything: A Neurologist Breaks It Down”

    Leave a review! This Bonus Episode is now available to everyone in celebration of Black History Month!! In our latest episode of Narcolepsy Navigators’ Medical Series, we sit down with Dr. Chris Allen, board-certified pediatric neurologist and sleep medicine specialist, founder of Quality Sleep and Neurology PC in Michigan. Dr. Allen brings both medical expertise and lived experience to the conversation, sharing his own 21-year journey living with obstructive sleep apnea while breaking down why sleep disorders are among the most misunderstood and underdiagnosed medical conditions today. We cover everything from narcolepsy misdiagnosis and pediatric sleep disorders to the dangerous myth that snoring is “normal,” the real connection between sleep and heart health, and why CPAP is not the only treatment option for sleep apnea. This episode is a must-listen for patients, parents, clinicians, and anyone who has ever been told, “You’re just tired.” Topics Covered Why sleep medicine is still under-taught in medical schoolsDr. Allen’s personal experience with sleep apneaWhy snoring is a medical red flag, not a jokeNarcolepsy vs depression vs hypersomniaPediatric sleep disorders and missed diagnosesADHD-like symptoms caused by poor sleep in childrenRestless legs, ferritin levels, and iron deficiencyThe link between sleep, heart disease, and blood pressureCPAP alternatives and emerging treatmentsHustle culture and why sleep deprivation hurts productivityRepresentation and trust in healthcare Why This Episode Matters Sleep disorders don’t just affect energy — they affect memory, mood, heart health, development, and lifespan. Dr. Allen explains why untreated sleep conditions quietly damage the body over time and why awareness can literally save lives. About the Guest Dr. Christopher J. Allen, MD is a board-certified pediatric neurologist and sleep medicine specialist, founder of Quality Sleep and Neurology PC. Known online as Sleep Dr. Chris, he is a leading voice in accessible sleep education and a strong advocate for patient-centered care. Above all, Dr. Allen is a devoted family man, proud husband, and father of two—bringing the same passion he holds for his patients to his home and loved ones. Every child deserves a good night's sleep... Purchase Your Copy of Sweet Dreams Today:  https://www.sleepdrchris.com/ Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast ***If you find these symptoms relatable, please seek medical advice.***

    46 min
  4. Advocacy Series S1E1: Why Narcolepsy Is a Family Diagnosis, Not Just an Individual One

    5 FEB

    Advocacy Series S1E1: Why Narcolepsy Is a Family Diagnosis, Not Just an Individual One

    Leave a review! Narcolepsy is often misunderstood, dismissed, and dangerously underdiagnosed — especially in women. In this powerful Advocacy Series episode, we sit down with Dr. Anne-Marie Morse, a neurologist with specialized training in child neurology and sleep medicine, to talk about what real advocacy looks like, why diagnosis delays can stretch nearly two decades, and how patients can reclaim power in the healthcare system. Dr. Morse breaks down one of the most important truths in sleep medicine: language matters. Words like tired, fatigue, and sleepiness are not interchangeable — and using the wrong one can lead to missed diagnosis and years of suffering. We also discuss the emotional reality of narcolepsy: grief, identity, guilt, family dynamics, and why peer support and global community are essential. From workplace wellness myths to school system failures, this conversation is both validating and activating. If you’ve ever felt unheard, minimized, or reduced to a score on a scale — this episode is for you. In This Episode, We Cover: Why narcolepsy impacts an entire ecosystem (family, friends, school, work) The average delay to diagnosis — and why women face longer delays The difference between sleepiness vs tiredness vs fatigue Why you are NOT your Epworth Sleepiness Scale score The best question a doctor can ask: “What can’t you do?” The grief that comes with diagnosis — for patients AND families Why mental health support should be standard in chronic illness care How peer support can prevent isolation and long-term disability Why sleep should be treated like water — essential, non-negotiable How advocacy needs to become global to create real change Key Takeaway “We need to create treatment regimens that fit people’s lives — not lives that fit treatment regimens.”  Dr Ann Marie Morse Resources Mentioned Project Sleep Hypersomnia Foundation Wake Up Narcolepsy Faces of Narcolepsy Julie Flygare’s book: Wide Awake and Dreaming Listen + Subscribe 🎧 Listen now and share this episode with someone who needs to hear it. Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast ***If you find these symptoms relatable, please seek medical advice.***

    1h 8m
  5. Medical Series S1E2: Breaking the Silence with Dr. Jill McGarry: Mental Health Support for Chronic Sleep Disorders

    16 JAN

    Medical Series S1E2: Breaking the Silence with Dr. Jill McGarry: Mental Health Support for Chronic Sleep Disorders

    Leave a review! In this episode of Narcolepsy Navigators, hosts Kerly and Sakhara, both living with narcolepsy type one, are joined by Dr. Jill McGarry, a clinical psychologist with 28 years of NHS experience. They delve into the importance of holistic health and mental health for managing narcolepsy. Dr. McGarry discusses strategies like energy level management, routines anchored by consistent wake times, and mindfulness. The conversation highlights the profound effects of psychological support, the importance of timing and sleep hygiene, and the benefits of a balanced diet. The episode underscores the need for a multidisciplinary approach in supporting individuals with narcolepsy and the potential benefits of community support. Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast ***If you find these symptoms relatable, please seek medical advice.***

    44 min
  6. S1E3:Advocacy Series: Advocacy in Action: A Discussion with Matt Hornsnell on Narcolepsy

    16 JAN

    S1E3:Advocacy Series: Advocacy in Action: A Discussion with Matt Hornsnell on Narcolepsy

    Leave a review! In this episode of the Narcolepsy Navigators Podcast, hosts Kerly and Iris introduce their new Advocacy Series aimed at spotlighting changemakers, advocates, and everyday heroes in the field of narcolepsy. They welcome Matt Hornsnell, a sleep advocate diagnosed with narcolepsy type one and obstructive sleep apnea, who shares his extensive experiences in advocacy, public speaking, and research. Matt discusses the importance of community support, the challenges of male representation in advocacy, and the delicate balance between personal life and advocacy work. The conversation delves into topics like the impact of narcolepsy on relationships and mental health, and the necessity of setting boundaries. This episode is an inspiring exploration of how personal stories and lived experiences can drive awareness and change. Bio: Matt Horsnell is a husband, father of three, and sleep advocate living with NT1 (narcolepsy with cataplexy) and obstructive sleep apnea. As an author-advocate, he has published research on lived experience with sleep disorders. Matt also works as a consultant for the pharmaceutical industry and on behavioral sleep projects. Matt has presented in national conferences at SLEEP and the Society of Behavioral Sleep Medicine (SBSM). Additionally, Matt is the Co-Host of Hypersomnia Foundation’s UNIGHT. Matt was recognized as Project Sleep’s Inaugural Sleep Advocacy Champion in 2023. In 2025, he was recognized with Hypersomnia Foundation’s Patient Advocate Award. Matt presented on Sleep Health Equity to The White House (2023) and was featured in a CNN article about life with narcolepsy (2024). Highlights: [03:09] The Importance of Social Support [07:13] Challenges and Rewards of Advocacy [14:03] Male Representation in Narcolepsy Advocacy [22:02] Parenthood and Advocacy Balance [23:02] Setting Boundaries in Advocacy OFFICIAL WEBSITE www.napsforlife.com  Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast ***If you find these symptoms relatable, please seek medical advice.***

    34 min
  7. S4E5: Running Half Marathons With Narcolepsy: Jayson’s Story From Taiwan

    7 JAN

    S4E5: Running Half Marathons With Narcolepsy: Jayson’s Story From Taiwan

    Leave a review! In this powerful international episode of Narcolepsy Navigators, we sit down with Jayson, a PE teacher, endurance runner, and advocate living with Narcolepsy Type 1 with cataplexy in Taiwan. Diagnosed as a teenager after repeatedly falling asleep in class, Jayson grew up navigating stigma, academic pressure, and deep misunderstandings — especially within a culture where performance and discipline are highly valued. Despite this, he has built a life centered around movement, self-awareness, and intentional boundaries, even running half marathons while managing narcolepsy. Jayson shares how suppressing emotions to avoid cataplexy affected his identity, why journaling and therapy changed his life, and how he re-designed his career to protect his health. He also gives rare insight into Taiwan’s healthcare system, cultural nap norms, military service exemptions, and what true balance looks like when energy is limited. This episode is honest, reflective, and deeply human — especially for anyone who has ever been told they “don’t look sick.” What You’ll Learn in This Episode What it’s like being diagnosed with narcolepsy as a teen in TaiwanHow teachers misread symptoms as laziness or lack of motivationThe emotional cost of suppressing joy to avoid cataplexyWhy Jayson chose flexible work over traditional career pathsHow exercise dramatically improves his sleep qualityThe role of journaling and therapy in emotional survivalCultural differences around naps and productivityHow plant-based eating helps him manage daytime sleepinessWhy narcolepsy is still not classified as a disability in TaiwanHis honest answer to the “red button” question Why This Episode Matters Narcolepsy doesn’t look the same in every country — and Jayson’s story highlights how culture, healthcare systems, and expectations shape the lived experience of sleep disorders. This conversation challenges stereotypes and proves that strength doesn’t always look like pushing harder — sometimes it looks like resting smarter. New Episode Out Now: https://www.napsforlife.com/podcast/episode/7f587a5c/s4e5-running-half-marathons-with-narcolepsy-jaysons-story-from-taiwan About the Guest Jayson is a PE teacher, endurance runner, and advocate from Taipei, Taiwan, living with Narcolepsy Type 1 with cataplexy. He uses movement, structure, and self-reflection to manage his condition and raise awareness across cultures. Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast ***If you find these symptoms relatable, please seek medical advice.***

    35 min
  8. S1E2: Advocacy Series: Lifting the Silence: Sleep Disorders Advocacy with Claire Wylds-Wright

    27/12/2025

    S1E2: Advocacy Series: Lifting the Silence: Sleep Disorders Advocacy with Claire Wylds-Wright

    Leave a review! In this powerful episode of the Narcolepsy Navigators Podcast, hosts Kerly and Liz kick off a new advocacy-focused series spotlighting changemakers in the sleep disorder community. They’re joined by Claire Wylds Wright, a UK-based advocate whose journey into advocacy began when her daughter was diagnosed with narcolepsy at a young age. What started as a search for answers quickly evolved into a mission to create change—leading Claire to become an author, mentor, and co-founder of the Sleep Consortium. Claire shares what it really takes to advocate within healthcare systems, why listening is one of the most powerful tools in medicine, and how collaboration is shaping the future of sleep disorder research and treatment. The conversation also tackles misconceptions, healthcare disparities, and what upcoming treatments could mean for families worldwide. This episode is a must-listen for advocates, caregivers, clinicians, and anyone passionate about better sleep health outcomes. What You’ll Learn in This Episode: How advocacy often begins at the diagnosis stageWhy patient voices matter in healthcare decision-makingThe mission behind the Sleep ConsortiumDifferences between UK and US healthcare systemsRacial disparities in sleep disorder diagnosis and careThe future of narcolepsy and hypersomnia treatmentsAdvice for new advocates entering the space🎧 Listen now and join the movement shaping the future of sleep health. Bio:  Claire is an award-winning author and patient advocate for people living with sleep disorders. After her daughter Mathilda developed Type1 Narcolepsy in 2010, her family moved from England to California to secure treatment and expert care for Mathilda under Professor Emmanuel Mignot at Stanford. Her book Waking Mathilda—A Memoir of Childhood Narcolepsy was published in 2017 and tells the story of parenting a young child with Narcolepsy and the impact of Mathilda’s diagnosis on her life and her family. She lives in Los Angeles with her son, daughter, and cat Mochi. Support the show Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: www.napsforlife.com Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast ***If you find these symptoms relatable, please seek medical advice.***

    56 min
See All (50)

About

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, idiopathic hypersomnia and Klein-Levin syndrome.  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 life with these conditions is an unseen odyssey, an intricate dance of challenges that most can't fathom. But we're here to bring those stories into the light, to give a voice to the silent struggles and the victories that often go unnoticed.It's about time the world saw beyond the misconceptions and understood the full impact these conditions have on someone's life.

Information

  • Creator
    Kerly Bwoga
  • Years Active
    2024 - 2026
  • Episodes
    50
  • Rating
    Explicit
  • Copyright
    © 2026 Narcolepsy Navigators Podcast
  • Show Website
    Narcolepsy Navigators Podcast