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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 awareness about narcolepsy. The episode also delves into the challenges and triumphs of living with a chronic sleep disorder, offering a poignant look at resilience and self-advocacy.

Episode Out Now! 

Link: https://www.napsforlife.com/podcast/episode/81863df7/s4e2-firefighter-emt-advocate-tara-oconnor-redefines-whats-possible-with-narcolepsy

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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 disorder.
• What support systems truly mean for children and parents.
• Why raising awareness of KLS is critical to changing perceptions.

This episode is not only a story of resilience and advocacy, but also a reminder of the importance of community for families facing rare conditions.

Listen in and be inspired by their courage, honesty, and determination to give their son the best life possible.

Episode Out Now

Link: https://www.napsforlife.com/podcast/episode/80bdf6b0/s4e1-klein-levin-syndrome-parenting-through-the-challenges 

#KleineLevinSyndrome #KLSAwareness #RareSleepDisorder #NarcolepsyPodcast #ParentingRareDisease #SleepHealthAdvocacy #ChildhoodSleepDisorder #InvisibleIllness #RareDiseasePodcast #KLSParentsPerspective #RareNeurologicalDisorder #IdiopathicHypersomnia #LivingWithKLS #RareDiseaseAwareness #SleepDisordersCommunity

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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 their new Patreon and merch store to help support their advocacy efforts.

Highlights:

02:45 Lucas's Narcolepsy Journey

09:06 Sleep Tests and Diagnosis

12:04 Support Systems and Coping Strategies

19:37 Parental Perspective on Narcolepsy

29:01 Challenges with Medical Support

32:15 Iron Deficiency and Its Impact

48:30 Raising Awareness and Seeking Support

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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 minimizing those pesky nightmares and vivid dreams. 

This is event is free, and when you register on Eventbrite you will be entered into a raffle for a chance to win a sticker, mug, or t-shirt from our merch store!

Date: Sunday, September 21st, 2025

Time: 2pm-4pm EST / 7pm-9pm UK time

Register here: https://tinyurl.com/N4LConnectionDay

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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. She highlights the need for increased awareness about narcolepsy in Namibia and reflects on how her condition has made her more resilient.

Episode Highlights

03:51 Josephine's Diagnosis Journey

04:47 Challenges and Misunderstandings

07:12 Life with Narcolepsy: School and University

21:27 Teaching Career and Managing Narcolepsy

28:01 Living with Narcolepsy

29:43 Challenges in Social Life and Teaching

34:31 Raising Awareness in Namibia

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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 breaking silence, reclaiming identity, and inspiring others in the sleep disorder community to embrace their truth. Whether you live with narcolepsy, support someone who does, or simply want to learn more, Fred’s voice will move you.

Chapters

• 00:00 Introduction & Meet Fred
• 05:20 Early Experiences with Narcolepsy
• 14:45 The Emotional Weight of Diagnosis
• 23:10 Identity, Stigma, and Representation
• 34:00 Finding Hope and Resilience
  
  

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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 discuss cultural attitudes toward chronic illness, the importance of supportive healthcare providers, and how Soheila is now using her voice to raise awareness through her new French podcast on sleep disorders. In one of the most moving moments, she shares why she wouldn’t press the “red button” to cure her narcolepsy—and how it has shaped her into the strong, determined person she is today.

Episode Highlights: 

00:00 – Introduction
 05:00 – Navigating Work with Narcolepsy
 09:15 – The Long Road to Diagnosis
 14:00 – Finding Acceptance Through Support
 17:00 – Family Reactions and Challenges
 23:00 – Friends, Loss, and True Support
 27:20 – Misconceptions About Narcolepsy in France
 31:10 – What Needs to Change in Society
 35:20 – Managing Symptoms and Daily Life
 39:30 – Social Life, Dating, and Boundaries
 44:14 – Advocacy and Launching Her Podcast
 48:58 – Why She Wouldn’t Cure Her Narcolepsy

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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 family together through it all.

She discusses the transformative moments that shifted her perspective, the importance of trusting maternal instincts, and why building the right medical team is vital. Gina’s story is more than a caregiver’s account—it’s a testament to resilience, advocacy, and love.

Whether you’re a parent, a person living with narcolepsy, or simply curious about the human side of chronic illness, this episode offers both practical wisdom and heartfelt inspiration.

Key moments:

• 03:13 – First symptoms and the long road to diagnosis
• 06:03 – Receiving the narcolepsy diagnosis
• 12:02 – Learning to trust maternal instincts
• 15:14 – Puberty’s impact on symptoms
• 22:15 – Caregiver grief and acceptance
• 36:46 – Navigating school accommodations
• 39:35 – Final reflections and words of encouragement

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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 needs to manage his symptoms while pursuing his passion for entertainment and technology.

You'll learn how community support plays a vital role in living with narcolepsy, and the hurdles one might face due to medication restrictions across different regions. With candid discussions around symptoms like sleep paralysis and vivid hypnagogic hallucinations, Hugh opens up about the emotional and practical realities of living with this condition. Discover how he has adjusted his life and career, the importance of accommodating work environments, and the ways in which cultural perceptions of narcolepsy can influence opportunities in unexpected ways.

Throughout this episode, we also touch upon the significance of managing narcolepsy symptoms without medication, the impact of new treatments like Wackix, and the role of naps in maintaining productivity. Hugh's reflections extend to gender-specific challenges and the need for more research on hormonal changes affecting those with narcolepsy. This conversation is not just about living with a condition; it's a testament to resilience, adaptability, and the power of advocacy, offering invaluable insights for anyone affected by or interested in narcolepsy.

Chapters

(00:13) Narcolepsy Navigators Intro
(11:12) Living With Narcolepsy
(24:10) Navigating Life With Narcolepsy
(28:26) Empowering Narcolepsy Advocacy Through Self-Employment
(35:59) Managing Narcolepsy Symptoms Without Medication
(40:38) Navigating Narcolepsy and Gender Roles

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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

The physical and emotional toll of food sensitivities

How her boyfriend and even her dog can spot sleep attacks before she can

The struggle between being social and simply surviving an outing

Using Luvox, an anti-anxiety medication, to manage cataplexy

Why she wouldn’t trade her narcolepsy for her ADHD


From hilarious analogies (sugar cravings as “fake diabetes attacks”) to heartbreaking amnesia moments, this episode is a masterclass in self-awareness, boundaries, and advocacy.

🔗 Plus: learn about her Facebook community for navigating gluten and dairy-free living with autoimmune disorders.

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