Narcolepsy Navigators Podcast
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 fa...
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 st...
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 c...
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...
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), an...
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 th...
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 pe...
S1 E4 Medical Series: Hot Flashes, Anxiety, Insomnia:The Menopause Sleep Crisis with Dr. Caitlin Chasser
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Narcolepsy Navigators launches its Medical Series focused on the medical side of narcolepsy and common comorbidities. Host Fred (currently undiagnosed sleep disorder) and co-host Bernadette (narcolepsy type 1) interview Dr. Caitlin Chasser, a family doctor turned sleep and menopause specialist, who describes her own insomnia linked to premature menopause and the lack of sleep education in medical training. The discussion covers how menopause and perimenopause commonly disrupt sleep (estimated 60–80% experience sleep disturbance), and how sleep affects appetite, hormones, weight, repair, memory, mood, and daily functioning. Dr. Caitlin explains the role of stress and the sympathetic ne...
Narcolepsy Was My Biggest Obstacle- Now Its My SuperPower
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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 bo...
S4E11: Blood Is Not Thicker: Boundaries, Trauma, and Narcolepsy
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⚠️ Content note: This episode includes discussion of childhood sexual abuse, suicidal ideation, and mental health crisis. Please take care of yourself first.
🎙️ EPISODE GUEST: Alejandro Bruner Solas — Program Manager, PWN for PWN | Narcolepsy Type 1 Warrior | Psychedelic Health Advocate | Colorado
In one of our most powerful episodes to date, Kerly and Liz sit down with Alejandro Bruner Solas — a half Puerto Rican, Colorado-based program manager, Freemason, martial artist, and passionate narcolepsy advocate — who lived with undiagnosed narcolepsy type 1 from the age of five until he was 38.
Ale...
Advocacy Series S1E4: The App Built From a Father's Love: Nabu AI's Origin Story
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Episode Summary:
What happens when a brand strategist — someone who's built campaigns for Aerosmith, Lenny Kravitz, Samsung, and Levi's — suddenly finds himself standing in front of a wall of machines keeping his newborn daughter alive? For Steve Lewis, it became the beginning of the most important work of his life.
In this episode of the Narcolepsy Navigators Advocacy Series, hosts Kerly and Iris sit down with Steve Lewis, founder of Nabu AI and director of Emotions.org, to talk about how a single sentence from his daughter Bowie — "Dad, I...
S4E10:Brain Fog and Blurry Words: The Invisible Symptoms Nobody Talks About
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In this powerful episode of Narcolepsy Navigators Season 4, we sit down with Amelia, a 28-year-old from London who discovered she had narcolepsy while playing cards on a skiing holiday. What started as uncontrollable laughter turned into a life-changing realization when her hands and neck kept dropping—classic cataplexy symptoms.
Amelia shares her raw and honest journey from being dismissed by doctors who told her "you exercise and eat meat, so nothing will show up" to finally receiving her diagnosis on New Year's Eve 2020. Her story takes us through the struggles of sixth form, th...
S4E9:Full Speed Ahead: How Narcolepsy Can't Stop This Race Car Driver
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Meet Vincent Arthur - a 21-year-old race car driver from Charlotte, North Carolina, who's proving that narcolepsy type 2 doesn't have to slow you down.
In this inspiring episode of Narcolepsy Navigators, Vincent shares his powerful journey from struggling with undiagnosed brain fog and excessive daytime sleepiness in 2019 to becoming the first race car driver sponsored by Wake Up Narcolepsy in 2023.
Discover how Vincent turned his diagnosis into a platform for advocacy, why he feels MORE comfortable behind the wheel than most people, and how he's using motorsports to shatter stereotypes...
S4E8:Motherhood, Pregnancy & Narcolepsy with Ashley Blankenship
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Can you have a successful pregnancy and thrive as a parent while living with Narcolepsy? This week on Narcolepsy Navigators, Kerly and Liz sit down with Ashley from North Carolina to answer this very question. Diagnosed in 2019 after over a decade of symptoms, Ashley shares her incredible journey through pregnancy and the first 20 months of motherhood. She opens up about the surprising relief from symptoms she experienced while pregnant, the difficult decision to come off life-changing medication, and the reality of navigating the "fourth trimester" with a chronic illness. From the importance of...
S4E7: Redefining Strength: Javiera's story of Resilience with IH
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In this powerful and emotional episode of Narcolepsy Navigators, we travel to South America for the very first time to share the story of Javiera Santamaría, a 28-year-old nurse from Santiago, Chile, living with Idiopathic Hypersomnia (IH).
Javiera opens up about her early symptoms, dangerous sleep attacks while driving, years of self-doubt, and the life-changing moment she finally received a diagnosis. Through laughter, tears, grief, and growth, she reveals how IH reshaped her relationships, her career, and her self-perception — and why she now feels proud of...
S4E6:Building a Life That Works With Your Energy: Cloud’s Journey
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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...
Medical Series S1E4:Hot Flashes, Anxiety, Insomnia-The Menopause Sleep Crisis: Insights with Dr. Caitlin Chasser
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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, i...
Medical Series S1E3 : Sleep Affects Everything: A Neurologist Breaks It Down”
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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.
...Advocacy Series S1E1: Why Narcolepsy Is a Family Diagnosis, Not Just an Individual One
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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 m...
Medical Series S1E2: Breaking the Silence with Dr. Jill McGarry: Mental Health Support for Chronic Sleep Disorders
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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...
S1E3:Advocacy Series: Advocacy in Action: A Discussion with Matt Hornsnell on Narcolepsy
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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...
S4E5: Running Half Marathons With Narcolepsy: Jayson’s Story From Taiwan
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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...
S1E2: Advocacy Series: Lifting the Silence: Sleep Disorders Advocacy with Claire Wylds-Wright
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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 syst...
S4E4: Microsleeps, Hallucinations & Homework: Wendy’s Daily Fight
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In this powerful and eye-opening conversation, 18-year-old Wendy shares what life is really like growing up with narcolepsy type 1 with cataplexy. Diagnosed at just 13 years old, Wendy opens up about sleep attacks in class, cataplexy triggered by laughter, hallucinations vivid enough to call the police, and the emotional toll of being a teenager who never gets to “just be a teenager.”
Through humor, honesty, and incredible resilience, Wendy talks about friendships, family, school accommodations, dating with narcolepsy, and what it means to walk into adulthood with a chronic sleep disorder — completely unmedicated.
H...
S4 E3: Beyond Narcolepsy: A Journey of Consciousness and Healing
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Trigger Content Notice:
This episode discusses psychedelics, substance use, religious/spiritual themes, and past trauma. Listener discretion advised.
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In this powerful and vulnerable episode of Narcolepsy Navigators, we sit down with Alexander, a 28-year-old from Pennsylvania who shares one of the most unique and spiritually profound narcolepsy journeys we’ve heard yet. Diagnosed at 17, his story moves through misdiagnosis, heavy stimulants, sleep paralysis, terrifying hallucinations, dopamine-seeking behaviors, pre-workout amphetamines, and how he rebuilt his life by shifting his mindset — spiri...
S4E2: Firefighter, EMT, Advocate: Tara O'Connor Redefines What’s Possible with Narcolepsy
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In this episode of NAR Lipsey Navigators, hosted by Kerly and Liz, the spotlight is on Tara, a 27-year-old woman from Maine who has been living with narcolepsy type 1. Tara shares her story, from being misdiagnosed with ADHD and ODD as a child to finally receiving the correct diagnosis at 22. She discusses her struggles with maintaining jobs, her journey through various treatments, and the significant lifestyle changes she implemented after her diagnosis. Tara's advocacy work, including her role as a patient ambassador for WSG and her social media presence, underscores her commitment to raising...
S4E1: Kleine Levin Syndrome: Parenting Through The Challenges
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In this heartfelt episode of Narcolepsy Navigators, Gabrielle and Paul share their family’s journey of raising a child with Kleine Levin Syndrome (KLS), also known as “Sleeping Beauty Syndrome.” Speaking openly about the uncertainty, the emotional toll, and the small victories, they offer listeners an inside look at how KLS impacts their son’s daily life — from sleeping 16–20 hours a day during episodes to rediscovering joy when awake.
The conversation touches on:
The challenges of finding a diagnosis in rural Maine.Navigating school, healthcare, and family life with a rare sleep...S3E12 Navigating Narcolepsy with Lucas and Kathy: Insights from Canada
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In this episode of Narcolepsy Navigators, hosted by Kerry Bwoga, the founder of Naps for Life, CIC, we sit down with 11-year-old Lucas and his mother Kathy from Toronto, Canada. Lucas shares his experiences living with Type 1 narcolepsy, detailing his daily struggles with sleepiness, cataplexy, and how he manages to stay active. Kathy provides insights into the challenges of navigating the Canadian healthcare system, advocating for better support and understanding for pediatric narcolepsy. The episode also highlights the importance of community support and awareness in managing sleep disorders. Additionally, Kerry announces the launch of...
NapsForLife Connection Day for World Narcolepsy Day
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Mark your calendar! Join the Narcolepsy Navigators and NapsForLife team on Sunday, September 21st for a live Connection Day to celebrate World Narcolepsy Day with people who really get it.
We'll be checking in with folks who have appeared in previous Narcolepsy Navigators episodes to see what they've been up to, and hopefully we'll also get to meet and connect with YOU, our valued audience members!
You'll have a chance to share some of your story and hear the team speak about maintaining good mental health and giving tips on mi...
S3E11 Navigating Narcolepsy in Namibia Josephine's Journey
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In this episode of Narcolepsy Navigators, hosts Kerly Bwoga and Liz are joined by Josephine Niipinge from Namibia, who shares her experience of living with narcolepsy with cataplexy. Diagnosed at the young age of 13, Josephine discusses the challenges she faced due to perceptions of witchcraft and lack of awareness about her condition in her community. She talks about her struggle to get appropriate medical treatment and how it impacted her education and social life. Josephine recounts her journey from being misdiagnosed and taken off medication to eventually finding effective treatment and resuming her studies...
S3E10: Fred: Finding Freedom & Life on the Road with Narcolepsy
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This week on Narcolepsy Navigators, Kerly sits down with Fred to explore what it truly means to live with narcolepsy while navigating identity, stigma, and self-acceptance. Fred opens up about the diagnosis journey, the challenges of being misunderstood, and how to balance vulnerability with strength.
From redefining what “disabled” means to them personally, to highlighting the importance of visibility and representation, Fred’s story is a powerful reminder that life with narcolepsy is not defined by limitations—but by resilience, courage, and the choice to live authentically.
This episode is about br...
S3E9 Soheila’s Story: Breaking the Narcolepsy Silence in France
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In this inspiring episode of Narcolepsy Navigators, we sit down with Soheila, a 22-year-old from the north of France, to explore what it’s like growing up with narcolepsy. Diagnosed after years of symptoms and medical misunderstandings, Soheila shares her journey from confusion and isolation to self-acceptance and advocacy.
She opens up about navigating school, work, and friendships while managing sleep attacks, memory issues, and the stigma surrounding narcolepsy in France. From unsupportive managers to incredibly understanding friends, Soheila’s story is a powerful example of resilience, self-advocacy, and finding community.
We...
S3E8 Gina: Narcolepsy Through a Parent’s Eyes
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When Gina’s six-year-old son began showing unusual sleepiness, tantrums, and sudden collapses, she never imagined it would lead to a diagnosis of narcolepsy with cataplexy. In this heartfelt and insightful conversation, Gina shares the highs and lows of navigating a rare sleep disorder as a parent and caregiver.
From the emotional rollercoaster of seeking answers to the relief of finally having a diagnosis, Gina offers an unfiltered look at the realities of raising a child with narcolepsy—balancing treatment trials, advocating in the school system, managing emotional well-being, and holding the fami...
S3E7 Hustling with Narcolepsy: Hugh’s Freelance Path
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What if managing a condition could open new doors and redefine your career path? Meet Hugh, a talented video technologist from Plymouth, UK who has navigated the unpredictable waters of narcolepsy while making waves in the live entertainment industry. From working on big rock concerts to contributing to cutting-edge virtual productions like “The Mandalorian,” Hugh shares his unique insights into balancing a demanding career with the challenges of a condition that began during his university years. Join us as we explore how his journey has led him to embrace self-employment, offering the flexibility he need...
S3E6 - Rebecca's Resilience: Navigating Life with Narcolepsy and ADHD
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In this eye-opening episode, we meet Rebecca from North Carolina, who shares her deeply personal and powerful experience living with narcolepsy type 1, cataplexy, ADHD, and a rare condition called gluten ataxia.
From the moment she describes sleep attacks hitting like an unstoppable sneeze to navigating misunderstood conditions while holding down jobs, attending interviews, and trying to maintain a “normal” social life—Rebecca paints a raw and relatable picture of life with multiple overlapping diagnoses.
She also opens up about:
Why she quit her stressful job to protect her health...
S3E5 Lisa's Story: From Falling Asleep at Work to Entrepreneur
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In this heartfelt episode of Narcolepsy Navigators, Kerly sits down with Lisa Isaac, an inspiring woman living with narcolepsy type 1 and cataplexy in New Zealand. From her days as a sporty teenager needing frequent naps, to being misdiagnosed with epilepsy, Lisa shares her winding journey to an accurate diagnosis — and how she finally found community and support.
Lisa opens up about:
Her move from the UK to New ZealandBeing dismissed by doctors and labeled "lazy"Her struggle with cataplexy triggered by laughterThe challenges of living in a co...S3E4 Taya’s Tale: How IH Stole My Energy— But Not My Life
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In this episode of Narcolepsy Navigators, we meet the radiant and resilient Taya Austin, a federal employee, nonprofit leader, and auntie-turned-parent, living with Idiopathic Hypersomnia (IH).
After years of being dismissed, misdiagnosed, and told to “just sleep better,” Taya finally received her diagnosis two years ago. From childhood naps and overwhelming exhaustion in college, to hiding her symptoms while earning her master's and serving her community, her story is one of silent suffering turned self-advocacy.
Taya talks candidly about:
[06:12] How doctors ignored her fatigue for year...S3E3 Crashing Into a Diagnosis: Meg’s Story
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In this raw and deeply moving episode of Narcolepsy Navigators, we meet Meg—a 36-year-old adoptee, student, and mental health advocate navigating life with narcolepsy type 1, CBID, Behçet’s syndrome, and bipolar disorder. Meg shares the emotional rollercoaster that led to her diagnosis after a devastating car crash, including the haunting vivid dreams, overwhelming fatigue, and misunderstood cataplexy that shaped her early adulthood.
From managing multiple chronic conditions to challenging cultural expectations as a Korean-American adoptee raised in a "tiger mom" household, Meg reflects on identity, resilience, and finding connection through vulne...
S3E2 Cooking, Collapsing, and Cristina’s Cataplexy Life
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🎙️ Ever dropped mid-conversation and had to explain it wasn’t drugs?
In this deeply personal and unexpectedly hilarious episode of Narcolepsy Navigators, we sit down with Cristina, the creator of Gourmet Recovery, to explore how she navigates life with Narcolepsy Type 1, cataplexy, and a solid sense of humor.
Cristina opens up about the frustrating path to diagnosis, being dismissed with chronic fatigue and fibromyalgia, and how her sleep attacks affected school, work, relationships—and even public spaces. From falling asleep in church to halluc...
Medical Series S1E1: Let’s Face It: Emma’s Truth About Sleep Apnea
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What happens when exhaustion is brushed off as “just stress” or “just pregnancy”?
In this moving episode of Narcolepsy Navigators, Emma Cooksey—host, author, and now Sleep Apnea Program Manager at Project Sleep—shares her long, harrowing journey with undiagnosed obstructive sleep apnea (OSA). After years of misdiagnosis, Emma’s wake-up call came behind the wheel—when she fell asleep while driving pregnant.
Emma dives into her diagnosis story, the daily challenges of adapting to CPAP therapy, and her mission to reshape how sleep apnea is seen and treated—especially for women, younger...
S3E1 Sarah: Owning Narcolepsy - The Power of Laughing Back
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In this unmissable Season 3 premiere of Narcolepsy Navigators, we curl up for a heartfelt and hilarious deep dive with comedian and podcaster Sarah Albritton, who opens up about living with narcolepsy type 1 and cataplexy—plus a rare twist: sexsomnia.
From being misdiagnosed as a teenager in Kentucky to becoming an advocate on stage and behind the mic, Sarah’s journey is one of resilience, radical acceptance, and redefining what thriving looks like. She breaks down everything from navigating sleep paralysis and medication barriers to the emotional weight of invisible illnesses—and how comedy...
