Narcolepsy Navigators Podcast

Narcolepsy Navigators Podcast

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Narcolepsy Navigators Podcast episodes

  • S5E5:We Think Outside the Box": Narcolepsy, ADHD, and Being Underestimated

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    Kylie Dennis O'Sullivan was diagnosed with narcolepsy type 1 at 12 years old — after years of being told by doctors that she was "just fat and lazy." In this Black History Month UK special, Kylie joins hosts Kerly and Sakhara to talk about growing up mixed-heritage in East London, the cataplexy episodes her mum mistook for night terrors, and the long road to her eventual diagnosis at Great Ormond Street Hospital — the first in her local borough in 20 years.

    Now 38, Kylie is an M&E (mechanical and electrical) project manager in housing, a single mom to seven-month-old Myles, and a self-described "outside the box" thinker who's stopped apologizing for how her brain and body work. She talks candidly about PCOS, a possible ADHD overlap, workplace accommodations that actually work, pregnancy and a C-section shaped by her condition, and the role music plays in regulating her nervous system — plus the orexin science behind why none of this is "just about sleep."

    Meet the Guest

    Kylie Dennis O'Sullivan, 38, is based in East London and has lived with narcolepsy type 1 for 26 years, diagnosed at Great Ormond Street Hospital at age 12. She works as an M&E project manager in housing, is a single mom to her son Myles, and uses creativity and music as her outlet.

    Chapters

    • 00:00
    • Show Intro
    • 00:42
    • Welcome & Introductions
    • 01:08
    • Weekly Check-In
    • 02:47
    • Meet Kylie & Diagnosis Basics
    • 03:49
    • Early Symptoms & Misdiagnosis
    • 07:00
    • Great Ormond Street Breakthrough
    • 09:08
    • School Life After Diagnosis
    • 11:10
    • Race, Family & Teen Challenges
    • 14:43
    • Medication, PCOS & Adult Care
    • 17:59
    • Weight, Metabolism & Gastric Bypass
    • 22:39
    • Living With Narcolepsy Long-Term
    • 24:06
    • Misconceptions, ADHD & Insomnia
    • 26:28
    • Ditching Sleep Pills
    • 27:00
    • Career Path Into Housing
    • 28:40
    • Hybrid Work With Narcolepsy
    • 30:31
    • Workplace Accommodations
    • 32:52
    • Single Mom Survival Mode
    • 35:06
    • Pregnancy & C-Section
    • 38:07
    • Rethinking Rest & Naps
    • 42:35
    • Creativity, Music & Orexin
    • 47:40
    • Exercise, Swimming & Limits
    • 49:34
    • Red Button & Closing Advice
    • 52:19
    • Patreon & Merch Shout-Out
    • 53:25
    • Outro & Community Info

    Resources Mentioned

    Great Ormond Street Hospital · Modafinil · Dexamfetamine · Professor Matthew Walker (neurologist) · Orexin agonists

    Links

    Website & support group: www.napsforlife.com
    Share your story: [email protected]
    Support the show: Patreon — www.patreon.com/NarcolepsyNavigators · Merch — merch.napsforlife.com/products

    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.***


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

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    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: [email protected]

    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.***


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

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    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: [email protected]
    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.***


    1 hr 18 min
  • S5E2: How a 16-Year-Old Learned to Stop Masking Narcolepsy

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    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.***


    43 min
  • Who Decides What a Medical Breakthrough Is Actually Worth?

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    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 1
    • Evidence 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.***


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

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    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.***


    51 min
  • YouTube Hates Us and That's Exactly the Point

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    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.***


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

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    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.***


    1 hr 18 min
  • S4E12: The Teacher Who Was Sent to Rehab for Being Sick

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    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.***


    53 min
  • S1E5 - Advocacy Series: 27 Years of Narcolepsy: From Rock Bottom to Elite Trainer

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    What does it look like to build an extraordinary life with narcolepsy — without medication?

    Welcome to the Narcolepsy Navigators Advocacy Series, where lived experience meets powerful storytelling. This week, Kerly and Liz sit down with David Kuhn: a 27-year narcolepsy survivor, elite master fitness trainer, licensed massage therapist, and founder of the Facebook community Narcolepsy Naturally.

    David's journey is one of the most remarkable we've heard. Diagnosed in 1998 at around age 28, he went from being unable to work, experiencing up to 40 cataplexy episodes a day, and reaching a personal rock bottom — to becoming a therapist for the Ohio State University football team, working with over 62 NFL players, Olympic gold medalists, and hundreds of elite athletes. And he has done all of this since 2010 entirely without narcolepsy medication.

    In this honest, emotional, and deeply inspiring conversation, David shares what it actually took — the discipline, the baby steps, the mental frameworks, the dietary changes, the fitness routine, and the hard decision to remove toxic stress from his life — to get to where he is today.

    He is not here to tell anyone what to do. He is here to show what is possible.

    ━━━━━━━━━━━━━━━━━━━━━━━━━━━━━
    WHAT YOU'LL HEAR IN THIS EPISODE
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    • The early symptoms David dismissed as tiredness from overwork
    • Falling asleep at the wheel — and the near-miss that finally sent him to a doctor
    • A devastating diagnosis with no hope offered by his first doctor
    • Medication overload, a mental health crisis, and the decision to walk out of a psych ward
    • Rock bottom, and the moment that changed everything
    • How he went back to school at 38 to become a massage therapist — medication-free
    • His daily routine: sleep tracking, gym before 7:30am, whole foods, strategic napping
    • Why he started the Narcolepsy Naturally Facebook group in 2015
    • The mental strategies that keep him going: audiobooks, self-help, positive input
    • Book recommendations: Seven Habits of Highly Effective People, Let Them Theory (Mel Robbins), Think and Grow Rich (Napoleon Hill)
    • How he uses narcolepsy as a "shock factor" to inspire the athletes he works with
    • His powerful message: narcolepsy is your soccer field, not your prison
    • The Red Button Question — and his answer will not surprise you

    ⚠️ NOTE: This episode contains discussion of suicidal ideation and mental health crisis within David's personal story. Please take care of yourself first.

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    CONNECT WITH DAVID
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    🌐 dkmotivations.com
    📧 [email protected]
    👥 Facebook: Narcolepsy Naturally (3,500+ members)

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    BOOKS RECOMMENDED IN THIS EPISODE
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    📚 The 7 Habits of Highly Effective People — Stephen Covey
    📚 The Let Them Theory — Mel Robbins
    📚 Think and Grow Rich — Napoleon Hill
    📚 The Power of Now — Eckhart Tolle (recommended by Liz)

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    SUPPORT NARCOLEPSY NAVIGATORS
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    💜 Join our Patreon for bonus content & Discord community access
    🛍️ Shop our merch at napsforlife.com
    🌐 www.napsforlife.com
    📩 [email protected]

    Have a sleep disorder story to share? We'd love to hear from you. Happy napping, everyone.

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    Support the show

    Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences.

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    www.napsforlife.com

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    ***If you find these symptoms relatable, please seek medical advice.***


    56 min

About Narcolepsy Navigators Podcast

From the publisher's feed

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…

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