Narcolepsy Navigators Podcast

<p>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. </p><p><br /></p><p>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. </p><p><br /></p><p>Because when we share, we have the power to change narratives – that’s our mantra, "Share a story to change a story."</p><p><br /></p><p>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.</p>

S4 E3: Beyond Narcolepsy: A Journey of Consciousness and Healing

Leave a review! Trigger Content Notice: This episode discusses psychedelics, substance use, religious/spiritual themes, and past trauma. Listener discretion advised. Leave a review! 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 paralysi...

12-09
48:31

S4E2: Firefighter, EMT, Advocate: Tara O'Connor Redefines What’s Possible with Narcolepsy

Leave a review! 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,...

10-09
42:37

S4E1: Kleine Levin Syndrome: Parenting Through The Challenges

Leave a review! 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 challeng...

10-01
01:17:29

S3E12 Navigating Narcolepsy with Lucas and Kathy: Insights from Canada

Leave a review! 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 pediatri...

09-22
57:14

S3E11 Navigating Narcolepsy in Namibia Josephine's Journey

Leave a review! 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...

09-15
51:28

S3E10: Fred: Finding Freedom & Life on the Road with Narcolepsy

Leave a review! 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 narc...

08-31
01:02:06

S3E9 Soheila’s Story: Breaking the Narcolepsy Silence in France

Leave a review! 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. F...

08-16
51:40

S3E8 Gina: Narcolepsy Through a Parent’s Eyes

Leave a review! 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 wit...

08-09
43:24

S3E7 Hustling with Narcolepsy: Hugh’s Freelance Path

Leave a review! 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 ...

07-21
53:12

S3E6 - Rebecca's Resilience: Navigating Life with Narcolepsy and ADHD

Leave a review! 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 m...

07-04
42:37

S3E5 Lisa's Story: From Falling Asleep at Work to Entrepreneur

Leave a review! 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 ...

06-09
47:57

S3E4 Taya’s Tale: How IH Stole My Energy— But Not My Life

Leave a review! 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 ...

05-18
37:57

S3E3 Crashing Into a Diagnosis: Meg’s Story

Leave a review! 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 ...

05-06
58:59

S3E2 Cooking, Collapsing, and Cristina’s Cataplexy Life

Leave a review! 🎙️ 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, relatio...

04-25
50:38

S3E1 Sarah: Owning Narcolepsy - The Power of Laughing Back

Leave a review! 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 thri...

04-07
01:10:58

S2E12 Jacquie & IH: The Reality Beyond Just ‘Tired’

Leave a review! Summary ️ What if it took a decade to get answers? In this episode of Narcolepsy Navigators, we sit down with Jacquie, a 25-year-old scientist from Texas, to discuss her journey with Idiopathic Hypersomnia (IH)—a sleep disorder that took 10 years to diagnose. From struggling through high school exhaustion to navigating university, lab work, and daily life, Jacquie shares how she advocates for herself and others while juggling a deman...

03-20
47:22

S2E11 Narcolepsy, Mental Health, and Self-Love: A Conversation with Dawn

Leave a review! Summary What does it mean to truly thrive with narcolepsy? In this powerful episode of Narcolepsy Navigators, we sit down with Dawn Super, a passionate advocate who has lived with Narcolepsy Type 1 for over 40 years. From childhood isolation to self-acceptance, Dawn takes us through the challenges of growing up misunderstood, learning to manage symptoms, and the mental health struggles that come with living with a chronic illness. Da...

03-10
42:44

S2E10 Storytelling with a Purpose: How Tre Burge is Making Waves

Leave a review! Summary ️ What if the world saw narcolepsy for what it truly is? Meet Tre Burge, an educator, designer, and fierce narcolepsy advocate, as he takes us through his journey of living with Narcolepsy Type 1. Diagnosed at 18, Tre quickly realized the lack of awareness, representation, and resources surrounding sleep disorders—especially in Black and Brown communities. In this episode, Tre shares how he turned his experience into a missio...

02-27
41:35

S2E9 Jamie Nicole: Turning Diagnosis into Purpose

Leave a review! In this inspiring episode of Narcolepsy Navigators, we meet Jamie Nicole, a certified Holistic Health Coach, Autoimmune Strategist, and unstoppable advocate. Diagnosed with narcolepsy type 2 at 39, Jamie shares her journey of battling years of exhaustion, misdiagnoses, and systemic barriers—all while juggling life as a student, mother, and professional. Jamie dives deep into her experience with autoimmune diseases, the emotional toll...

02-13
58:25

S2E8 Sleeping for Weeks: Imaarl’s Story with KLS

Leave a review! London’s rush never stops—but for Imaarl Duprey, time did. At 18, what should have been a typical New Year’s Eve turned into the beginning of a mystery illness that would steal weeks, even months, of her life at a time. Diagnosed with Kleine-Levin Syndrome (KLS), or Sleeping Beauty Syndrome, Imaarl found herself trapped in a cycle of disbelief, misdiagnosis, and isolation, waking up to a world that had moved on without her. In this e...

02-04
56:33

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