Narcolepsy Navigators Podcast

Kerly Bwoga

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. 6d ago

    S5E4: Why We Just Want to Be Trusted: Narcolepsy, Careers, and Burnout

    Leave a review! Liz is a speech and language therapist. Christine is a former chartered accountant. Both were diagnosed with narcolepsy type 1 — and both have had to fight, again and again, for accommodations they were legally entitled to. In this episode, Liz and Christine sit down for an honest career chat: the university meeting where Liz was told she'd never qualify as a therapist, Christine being denied a split exam sitting and then set up to fail four exams in four days, the "breadcrumb" accommodations that never quite add up to equal footing, and the burnout that comes from constantly having to prove a disability is real. They close with why they're both now choosing to build careers on their own terms instead of waiting for workplaces to catch up. Meet the Guests  Liz is a sociable, creative and empathetic person who loves meeting new people and diving into their stories.  Her passion for advocating for others with needs or differences, and the skills she’s developed as a therapist, mean that she has many strengths as a narcolepsy advocate. She also has a lot of experience advocating for herself in the workplace. After meeting Kerly at a narcolepsy conference and being one of the first guests on the podcast, she quickly realized she’d love to be a cohost and get more involved in the narcolepsy community. A year and a half later, Liz has interviewed many guests on the podcast and has really benefited from meeting a variety of people with narcolepsy- feeling supported and less alone. Liz is excited to see where the future takes her and to continue on her advocacy journey. Christine is a passionate narcolepsy advocate dedicated to raising awareness, supporting early diagnosis, and helping others feel less alone in their journey. After navigating her own path to understanding life with narcolepsy, she began sharing her experiences through her blog and creative projects, aiming to bridge the gap between medical facts and real-life experiences. With a warm, open style, Christine uses her platforms — including her vlog series and written resources — to demystify narcolepsy, highlight its impact on daily life, and inspire others to seek answers when something feels “off.” She believes that sharing honest stories can spark understanding, reduce stigma, and lead to faster, more accurate diagnoses. When she’s not advocating, Christine enjoys creating calming stationery, exploring nature, and finding beauty in the small, quiet moments of life. Chapters 00:00 Welcome to the Podcast 01:06 Career Impact Overview 01:21 Liz's Diagnosis and Starting University 02:31 University Discrimination Story 04:28 Fighting for Adjustments 07:02 Knowing Your Rights 09:13 Christine's Uni and Exam Barriers 11:52 Workplace Culture and Buzzwords 15:09 Christine's Career Pivot Research 17:51 Liz's First Job and Napping Setup 21:55 Exam Accommodations and Fairness 27:01 Later Jobs, Burnout, and Managers 30:13 Workplace Scrutiny and Anxiety 32:19 Managing Symptoms at Work 33:46 Motivation, Naps, and Mindset 35:34 Job Search and Self-Employment 38:41 Why Diagnosis Fails So Many 40:02 Quitting the London Job 45:22 Burnout to Flexibility 53:10 Trust and Adjustments 57:32 Resources and Sign-Off Resources Mentioned Calibre Disability Leadership Course (NHS) · Go Succeed · Invest NI · Catalyst (Northern Ireland business hubs) · The Equality Act Links Website & support group: www.napsforlife.com Share your story: narcolepsynavigators@gmail.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.***

    S5E4: Why We Just Want to Be Trusted: Narcolepsy, Careers, and Burnout
  2. Sep 22

    S5E3: She Falls Asleep, She Can't Stop Ticcing — Meet Two Best Friends

    Leave a review! Mel has narcolepsy without cataplexy.Jeanna has Tourette syndrome. They met in a Walmart parking lot, went viral for a motorcycle ride the internet still argues about, and somehow became each other's safest place — through a cancer relapse, childhood trauma, and a lot of dark humor. In this episode, hosts Kerly and Sakhara sit down with Mel ("Mel of the Mountains") and Jeanna (founder of Tourette Taxi) to talk about what happens when two very different neurological conditions meet inside one friendship. They cover the viral video that made strangers argue over whether Mel's narcolepsy was "real," the difference between narcolepsy type 1 and type 2, why Tourette's tics get worse under stress and staring, cataplexy safety concerns, and what it means to finally stop apologizing for symptoms you can't control. Meet the Guests Mel Stanger ("Mel of the Mountains") lives with narcolepsy without cataplexy, discovered after falling asleep while driving a motorcycle. Outside of advocacy, she tans animal hides and teaches others how to work hide into clothing. She is currently navigating a cancer relapse. Jeanna DiVitro is the founder of Tourette Taxi (Tics, Trips, Truths), a social media platform where she uses humor to raise awareness for Tourette syndrome and its common comorbidities, including ADHD, anxiety, depression, OCD, and bipolar II. Chapters 00:00 Meet the Hosts and Guests 00:55 Mel and Jeanna Introduce Themselves 03:14 How They Met Online 06:17 First Impressions and the Viral Ride 09:05 Humor as Healing and Awareness 11:58 Living With Narcolepsy and Tourette's Day to Day 14:29 Misconceptions and Public Anxiety 24:09 Cataplexy Safety and Medical ID 30:56 Triggers, Waves, and Changing Symptoms 38:39 Narcolepsy Types and Diagnosis Basics 40:05 Tourette Diagnosis Challenges 42:12 Comorbidities Reality Check 44:09 Cancer Relapse Support 52:36 Disability and Boundaries 57:41 Tourette Taxi Origin Story 1:02:51 What Healthcare Pros, Employers & Families Should Learn 1:09:10 Takeaways and Dark Humor 1:15:07 Closing: Happy Napping Links Website & support group: www.napsforlife.com Share your story: narcolepsynavigators@gmail.com Follow Jeanna: Tourette Taxi (Tics, Trips, Truths) Follow Mel: Mel of the Mountains 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.***

    S5E3: She Falls Asleep, She Can't Stop Ticcing — Meet Two Best Friends
  3. Sep 3

    S5E2: How a 16-Year-Old Learned to Stop Masking Narcolepsy

    Leave a review! At just 16, Chloe has already lived through what most people spend decades trying to understand about themselves. Diagnosed with narcolepsy type 1 in seventh grade after a mysterious two-to-three month stretch of sleeping nearly 20 hours a day, Chloe went from straight-A student to fighting for her own accommodations — and came out the other side with a clear plan to become a sleep doctor. In this episode, Narcolepsy Navigators co-hosts Kerly and Matilda (making her hosting debut!) sit down with Chloe to talk diagnosis, identity, dating with a chronic illness, self-advocacy, and why she wouldn't press the Red Button even if she could. 00:00 Welcome to Season 5 of Narcolepsy Navigators 00:46 Meet Chloe, and Matilda's co-hosting debut 06:33 Chloe's diagnosis story: 20 hours of sleep a day 08:16 The relief — and identity shift — of finally getting answers 11:14 Giving up competitive dance 14:32 Family, half-siblings, and explaining narcolepsy to divorced parents 17:11 Best friends who really understand 22:43 Dating and relationships with narcolepsy 26:19 Grief, acceptance, and learning to advocate for herself 33:34 A packed AP course load and the planner that keeps her sane 37:00 Career goals: becoming a sleep doctor 39:21 The Red Button Question About The Guest:  Chloe Chea is a student and advocate born and raised in Texas with a Chinese Cambodian background. Diagnosed with Narcolepsy Type 1 in 2021 at the age of 12, she is passionate about raising awareness for sleep disorders and empowering others navigating similar challenges. Her firsthand experience managing narcolepsy in academic and social settings fuels her commitment to advocacy, peer support, and bridging the gap between lived experience and understanding among younger populations. Chloe is actively involved in her school community and seizes opportunities to speak about narcolepsy and raise awareness whenever possible. In searching for outlets to deepen her impact while in high school, she discovered NapsForLife and Narcolepsy Navigators, whose work inspired her to become more involved in the sleep disorder community and eventually join the team to help carry its mission forward.. Though still early in her journey, Chloe is determined to make a lasting difference. She works at her family’s donut shop in her spare time, and plans to pursue a career in healthcare in hopes of helping to build a future where chronic illnesses like narcolepsy are better understood, accommodated, and treated with compassion, while fostering an empathetic and safe environment for all. 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.***

    S5E2: How a 16-Year-Old Learned to Stop Masking Narcolepsy
  4. Aug 15

    Who Decides What a Medical Breakthrough Is Actually Worth?

    Leave a review! What is the exact dollar value of staying awake? In this special episode, we dig into a real independent evidence report on Orzeyful (oporexin), a newly FDA-approved drug for narcolepsy type 1 that works completely differently from anything currently on the market — it doesn't just manage symptoms, it replaces the missing brain chemical behind the disease itself. We break down what the science actually means, why a "C++" grade from independent researchers is secretly a huge win, why the $50,000-a-year price tag might actually be the fair one, and the insurance practice called step therapy that could still stand between patients and the drug they need. About The Episode  This is a special deep-dive episode: instead of a guest conversation, we're unpacking a real independent evidence report — from the Institute for Clinical and Economic Review (ICER), based on an August 2026 Sleep Review article — on Orzeyful, a newly approved narcolepsy type 1 treatment, and what its pricing debate means for patient access. Resources:   Institute Publishes Evidence Report on New Narcolepsy Treatment (Sleep Review)   ICER Final Evidence Report: Overporexton for Narcolepsy Type 1Evidence Rating Details: B+ and C++ Explained (ICER) Policy Recommendations on Pricing and Access (ICER)FDA Approves First Drug to Treat the Full Range of Narcolepsy Type 1 Symptoms (FDA)FDA Approves Takeda's Orexin Agonist for NT1: Orzeyful (Sleep Review)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.***

    Who Decides What a Medical Breakthrough Is Actually Worth?
  5. Aug 10 ·  Bonus

    Advocacy Series: S1E6 Meet the Woman Who Created the World's First IH Nonprofit

    Leave a review! It took Michelle Chadwick 20 years to get diagnosed with idiopathic hypersomnia (IH)  and when she finally did, she found almost nothing online to help her make sense of it. So she built it herself. In this Advocacy Series episode, hosts Kerly and Christine talk with Michelle Chadwick, founder of Hypersomnias Australia and creator of the world's first Global Idiopathic Hypersomnia Awareness Week, about the two-decade road to diagnosis, the funding gap no government will close, the medical record that still says the wrong diagnosis, and the honest truth about what advocacy actually costs. About The Guest:  Michelle Chadwick is a global advocate for people living with sleep disorders, with both a personal and professional interest in the space. She lives with idiopathic hypersomnia (IH), and in 2013 founded Hypersomnias Australia — the world's first nonprofit dedicated to IH — alongside the Global Idiopathic Hypersomnia Awareness Week and Australia's IH Patient Registry. She chairs Sleep Disorders Australia, sits on the Australian Sleep Association's Disorders of Central Hypersomnolence Working Group and the Global Sleep Consortium Expert Working Group, and has spoken at government hearings worldwide to advocate for better research, diagnosis, and care. 00:00 Welcome to the Advocacy Series 01:08 Meet Michelle Chadwick from Brisbane, Australia 03:47 Michelle's bio: founder of Hypersomnias Australia 07:34 What is IH, and Michelle's first symptoms at age 11 10:44 The 20-year road to diagnosis 12:05 Getting diagnosed, but getting no support 15:01 Building lifestyle strategies from scratch 18:57 The meeting that led to founding Hypersomnias Australia 20:26 Obstacles, stigma, and "I might not do it again" 23:29 IH vs. narcolepsy, explained simply 27:17 The government funding gap no one talks about 30:59 Workplace disclosure: why so many can't work in their trained field 37:37 Getting researchers to finally take IH seriously 40:30 Michelle's honest advice for newly diagnosed advocates 44:20 Morning routine hacks for sleep inertia 47:30 The Red Button Question If this episode resonated with you, share it with someone who needs to hear it — especially anyone newly diagnosed and searching for the support that didn't exist for Michelle either. Subscribe, leave a review, and join our community. Happy napping, everyone. 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.***

    Advocacy Series: S1E6 Meet the Woman Who Created the World's First IH Nonprofit
  6. Jul 23

    YouTube Hates Us and That's Exactly the Point

    Leave a review! What happens when you crack open the backend analytics of a podcast built for one of the rarest, most invisible patient communities on earth? In this special episode, we dig into the data behind Narcolepsy Navigators — the downloads, the device stats, the surprising cities driving our global audience, and the uncomfortable tension between chasing scale and staying true to the exhausted, isolated listener we built this show for in the first place. Turns out the algorithm doesn't understand our audience at all. Photophobia and brain fog make video a barrier instead of a bonus. Exhaustion means listeners hit play in a browser tab instead of switching apps. And a single doctor in Philadelphia or advocate in Lisbon can do more for our reach than any trending hashtag ever could. This is the story behind the numbers — and why we're choosing to stay a lighthouse instead of a billboard. About This Episode:  This is a special data-deep-dive episode: instead of a guest conversation, we're breaking down our own podcast analytics ,download geography, device behavior, YouTube performance, and Spotify growth from December 2023 through March 2026  to understand what the numbers actually reveal about how our community finds us and why they stay. If you're one of the listeners in this data  whether you found us through a link in a forum, a doctor's printout, or a friend in a support group  thank you for being part of the reason this show exists. Subscribe, leave a review, and share this episode with someone who needs to know they're not alone. Happy napping, everyone. 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.***

  7. Jul 23

    S5E1: The Night I Carried My Sleeping Son to the ER

    Leave a review! What happens when your teenage son stops closing doors, watches the same movie three times in one day without remembering, and disappears from his own life for weeks at a time? In this episode of Narcolepsy Navigators, hosts Kerly and Ross sit down with Jonathan Lyons — a father from Florida who's spent the last eight years advocating for his son, diagnosed with Kleine-Levin Syndrome (KLS) at just 14 years old. Jonathan shares the chaotic path to diagnosis, the ER visit that changed everything, the communities that showed up (and the ones that didn't), and what it really means to parent a child who's been robbed of years of his own life. This is a rare, honest look at chronic illness from the caregiver's side of the story. 00:00 Welcome to Season 5 of Narcolepsy Navigators 01:16 Meet Jonathan: father and caregiver to a son with KLS 03:30 "Maybe he shouldn't drive" — the doctor's first advice 06:28 Early signs mistaken for puberty 07:37 Behavioral changes: aggression, hyperphagia, and memory loss 13:54 Realizing this might be medical, not behavioral 18:32 The breaking point: carrying his son to the ER 23:21 Finding the "guardian angel" doctor and the grandmother brigade 31:03 The fog vs. the sleep: which is worse? 38:17 How the synagogue and scouting communities responded differently 45:49 Adult body, teenage mind: the emotional gaps KLS leaves behind 57:11 The grief no one talks about 1:02:51 KLS trajectory research and the changing "texture" of episodes 1:06:49 Advocacy: bringing an attorney to a school meeting 1:09:21 The Red Button Question Guest Bio  Jonathan Lyons is a father and caregiver based in Florida whose son was diagnosed with Kleine-Levin Syndrome in 2017 at the age of 14. Over the past eight years, Jonathan has become a fierce advocate for his son — navigating diagnosis, school accommodations, and a healthcare system with almost no answers for a disease this rare. He also keeps a blog documenting the family's journey at klsproject.org. 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.***

    S5E1: The Night I Carried My Sleeping Son to the ER
  8. Jul 14

    S4E12: The Teacher Who Was Sent to Rehab for Being Sick

    Leave a review! Imagine falling asleep for two months straight — losing your memory, your personality, even your sense of time. That's life with Kleine-Levin Syndrome (KLS), one of the rarest sleep disorders in the world. In this episode of Narcolepsy Navigators, hosts Kerly and Sakhara sit down with Saphronia Young, a former elementary school teacher from Texas living with both KLS and Narcolepsy with Cataplexy. Saphronia opens up about her decade-long fight for a diagnosis, the school district that sent her to an alcohol treatment center instead of supporting her, the family nickname "Lola" for the person she becomes during an episode, and her honest, unfiltered answer to the Red Button Question: would she push the button to erase her diagnosis if she could? This is a conversation about resilience, faith, and what it costs to be misunderstood by the people who are supposed to help you. About The Guest Saphronia Young is a former elementary school teacher from Texas living with Kleine-Levin Syndrome (KLS) and Narcolepsy with Cataplexy. Diagnosed with KLS in 2016 after years of misdiagnosis, and with narcolepsy just three years ago, Saphronia now works as a virtual tutor from home, where she can manage her episodes on her own terms. She's a mom, a fighter, and an advocate for greater awareness of rare sleep disorders. 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.***

    S4E12: The Teacher Who Was Sent to Rehab for Being Sick

Ratings & Reviews

5
out of 5
5 Ratings

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.

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