Narcolepsy Navigators Podcast

Kerly Bwoga
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 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. MAR 20

    Jacquie & IH: The Reality Beyond Just ‘Tired’

    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 demanding scientific career. Key Takeaways: ✔️ The challenges of getting diagnosed with a rare sleep disorder ✔️ What it’s like managing IH in a high-pressure work environment ✔️ The mental toll of constantly feeling exhausted ✔️ Why raising awareness is crucial for funding future research For Jacquie, science and advocacy go hand in hand. She refuses to let her condition define her future and is using her voice to create change. Listen now! Chapters (00:00) Navigating Life With Sleep Disorders(12:58) Navigating Life With Invisible Disabilities(19:41) Accidental Journey Into Science(22:43) Navigating Career Aspirations With IH(26:26) Advocating for Research on Sleep Disorders(31:41) Navigating and Advocating for Invisible Disabilities(39:45) Navigating Hope in Adversity Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Jacquie: Instagram: https://www.instagram.com/thesleepiestscientist/  Follow and support Narcolepsy Navigators: OFFICIAL WEBSITE GUYS >>>>>>> www.napsforlife.com   Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/

    47 min
  2. MAR 10

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

    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. Dawn shares hard-earned wisdom on resilience, self-love, and why finding community is crucial for people with narcolepsy. She also discusses how positivity isn’t about ignoring reality but embracing it with strength and grace. Whether you have narcolepsy, struggle with mental health, or are looking for inspiration, Dawn’s journey is one you won’t want to miss. Listen now! ________________________________________________ Chapters (00:10) Narcolepsy and Mental Health(07:53) Navigating Social Interactions and Self-Acceptance(22:04) Personal Growth and Self-Acceptance(33:15) Resilience and Self-Discovery in Narcolepsy Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Dawn Super: Website: https://naturalhealing.coach/Instagram: https://www.instagram.com/healcoach/ LinkedIn: https://www.linkedin.com/in/healcoach/ Youtube: https://www.youtube.com/@DawnSuper  Follow and support Narcolepsy Navigators: OFFICIAL WEBSITE GUYS >>>>>>> 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 ...

    43 min
  3. Storytelling with a Purpose:  How Tre Burge is Making Waves

    FEB 27

    Storytelling with a Purpose: How Tre Burge is Making Waves

    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 mission: from launching Wake Up Entertainment, a creative hub for sleep disorder advocacy, to using social media, fashion, and media storytelling to reshape public perceptions. His passion for authentic representation in film, TV, and online spaces is breaking barriers and sparking conversations worldwide. Join us for a raw, powerful conversation about creativity, resilience, and the urgent need for accurate narcolepsy awareness. Listen now! Chapters (00:10) Narcolepsy Advocacy Through Personal Journey(10:51) Creative Representation in Media for Narcolepsy(24:54) Narcolepsy Advocacy and Representation in Media(34:01) Building Awareness Through Creativity Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Tre Burges: Website: https://rb.gy/bq70mr Instagram: https://www.instagram.com/hefallsasleepshop/ TikTok: https://www.tiktok.com/@hefallsasleep?lang=en  Follow and support Narcolepsy Navigators: OFFICIAL WEBSITE GUYS >>>>>>> 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.***

    42 min
  4. Jamie Nicole: Turning Diagnosis into Purpose

    FEB 13

    Jamie Nicole: Turning Diagnosis into Purpose

    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 of undiagnosed narcolepsy, and how holistic health practices helped her regain control. From reversing Hashimoto's symptoms to managing narcolepsy through nutrition, movement, and mindset shifts, Jamie’s story is a masterclass in resilience. Join us as Jamie uncovers the power of self-advocacy, the importance of community support, and why living fully with chronic illness is not just possible—it’s revolutionary. Chapters (00:14) Living With Narcolepsy12:52) Autoimmune Diseases and Narcolepsy Relationships(22:40) The Struggle With Narcolepsy Diagnosis(27:59) Narcolepsy and Autoimmune Lifestyle Changes(41:24) Community Support for Chronic Illness(46:49) Autoimmune Protocol and Nutrition Strategies(53:06) Living Optimally With Chronic Illness Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Jamie Nicole: Website: https://naturalhealing.coach/Instagram: https://www.instagram.com/healcoach/ LinkedIn: https://www.linkedin.com/in/healcoach/  Follow and support Narcolepsy Navigators: OFFICIAL WEBSITE GUYS >>>>>>> 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:

    58 min
  5. Sleeping for Weeks: Imaarl’s Story with KLS

    FEB 4

    Sleeping for Weeks: Imaarl’s Story with KLS

    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 episode of Narcolepsy Navigators, Imaarl shares what it’s like to lose time, battle stigma, and fight to be believed. She dives into the emotional toll on her family, the frustration of an untreatable condition, and the resilience it takes to rebuild a life interrupted by sleep. Now a mental health advocate and researcher, she’s turning her story into awareness, challenging misconceptions, and proving that rare disorders deserve recognition. Listen now for a powerful conversation on resilience, advocacy, and reclaiming time. Chapters (00:10) Living With Klein-Levin Syndrome(10:50) Uncontrollable Sleep Episodes and Diagnosis(14:41) Navigating Life With KLS Diagnosis(21:44) Impact of KLS Episodes on Life(27:53) Living With KLS(36:51) Navigating Stigma Around KLS(44:48) Navigating Uncertainty With KLS(50:29) Navigating Life With KLS Challenges Subscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: OFFICIAL WEBSITE GUYS >>>>>>> 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.***

    57 min
  6. Dreams, Hallucinations, and Chloe's Life with Narcolepsy

    JAN 12

    Dreams, Hallucinations, and Chloe's Life with Narcolepsy

    In this episode, we are joined by Chloe, who shares her compelling journey of balancing narcolepsy type 1 and obstructive sleep apnea while pursuing a career in optometry. From the thrill of quad biking to the challenges of everyday tasks like getting a haircut, this episode uncovers the rollercoaster ride of managing sleep disorders. From the comical to the challenging, we explore how everyday tasks like getting a haircut can become monumental experiences. Our conversation ventures into the nuanced aspects of narcolepsy, such as vivid dreams, hallucinations, and the comforting role pets can play during uncertain times.  We share strategies for staying awake during important moments, like lectures, and the unique ways our pets help us navigate these challenges. Listen in as we tackle misconceptions head-on and reveal how narcolepsy has not only shaped our relationships and social interactions but has also become a significant part of who we are. Chapters (15:55) The Emotional Impact of Diagnosis(23:13) Managing Narcolepsy: Medication and Daily Life(28:22) Coping Mechanisms for Narcolepsy(30:23) Experiencing Hallucinations(36:11) The Impact of Trauma on Hallucinations(39:44) Auditory Hallucinations and Their Comfort(44:53) Navigating Relationships with Hallucinations(52:29) Social Challenges in University Life Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences. Follow and support Narcolepsy Navigators: OFFICIAL WEBSITE GUYS >>>>>>> www.napsforlife.com   Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast TikTok: https://www.tiktok.com/@narcolepsynavigators Youtube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast  ***If you find these symptoms relatable, please seek medical advice.***

    1h 1m
  7. 20 Years to Clarity: Glenn's Narcolepsy Experience

    12/31/2024

    20 Years to Clarity: Glenn's Narcolepsy Experience

    Summary Glenn takes us through his remarkable journey to a proper diagnosis of narcolepsy type 2 after 20 long years, sharing how his life and career in local government have been influenced by his symptoms and the critical importance of workplace understanding and accommodation. The episode sheds light on many struggles faced by those with undiagnosed narcolepsy, like Glenn, whose excessive yawning and unintended naps were often misinterpreted. We talk about the broader challenges of receiving proper medical guidance, initial misdiagnosis, and how additional health issues like osteoporosis and vertigo complicate the path to understanding and managing narcolepsy. The social and professional hurdles are real, and Glenn recounts personal anecdotes about how these experiences shaped his life, emphasizing the need for awareness and correct support. Glenn's candid conversation about the underrepresentation of men in the narcolepsy community, along with the stigma of acknowledging such conditions, is a powerful reminder of the need for diverse voices. As we explore themes of acceptance, self-kindness, and the impact of community connections on mental health, Glenn and I underline the importance of normalizing narcolepsy. We also reflect on the strength gained through sharing stories within the community, leaving listeners with a message of resilience and the importance of self-care. Join us to explore the wisdom found in connection and the power of letting go of shame to embrace a full life despite narcolepsy. CHAPTERS (03:26) Living with Narcolepsy Type 2(05:37) Impact of Diagnosis on Career(09:08) Misdiagnosis and the Road to Narcolepsy(16:11) Challenges in Seeking Help(22:47) Support and Community in Australia(25:57) Advocacy and Representation in Narcolepsy(34:01) Social Life and Narcolepsy(37:24) Stress Management Strategies(44:29) The Importance of Self-Kindness(48:34) Community and Connection   Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences. Follow and support Glenn:https://www.instagram.com/glenn2145/  Follow and support Narcolepsy Navigators: DONATE: https://square.link/u/AhLKgFK4  OUR WEBSITE GUYS>>>>>>> https://napsforlife.wixsite.com/napsforlife  Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/ Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/ LinkedIn:

    58 min
  8. Rachel’s Superpower: Advocacy Through Sleep and Song

    12/23/2024

    Rachel’s Superpower: Advocacy Through Sleep and Song

    Summary In this episode of Narcolepsy Navigators, Rachel Nesmith, also known as Sleepy American, shares her personal journey with narcolepsy, the challenges of motherhood, and how she uses music as a platform for advocacy. Rachel discusses her diagnosis, the impact of narcolepsy on her life and family, and the importance of community support. She emphasizes the need to change public perceptions of narcolepsy through her music, aiming to raise awareness and provide relatable content for others facing similar challenges. In this conversation, the speakers discuss the critical importance of advocacy for narcolepsy awareness, the challenges faced in diagnosis and treatment, and the personal experiences of living with narcolepsy. They emphasize the need for better representation and understanding of the disorder, using transformative analogies to convey the realities of narcolepsy. The discussion also touches on identity, acceptance, and the significance of community support in navigating life with narcolepsy. Chapters (02:52) Understanding Narcolepsy and Its Impact(05:46) Family Dynamics and Support Systems(09:09) The Challenges of Motherhood with Narcolepsy(12:00) Music as a Medium for Advocacy(14:47) The Role of Music in Raising Awareness(20:46) Navigating Treatment and Support(23:59) The Importance of Community and Advocacy(36:30) Challenges in Diagnosis and Treatment(51:04) Identity and Acceptance of Narcolepsy(57:12) Community Support and Connection Subscribe for more inspiring episodes, share to raise narcolepsy awareness, and join the conversation by sharing your experiences. Follow and support Rachel:Linktree: https://tinyurl.com/dmvcxjda Instagram: https://www.instagram.com/thenapcave/  Follow and support Narcolepsy Navigators: OUR WEBSITE GUYS>>>>>>> https://napsforlife.wixsite.com/napsforlife  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:

    1h 6m

Ratings & Reviews

5
out of 5
3 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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