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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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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 Zealand
• Being dismissed by doctors and labeled "lazy"
• Her struggle with cataplexy triggered by laughter
• The challenges of living in a country with few specialists
• How creativity became her unexpected lifeline

Lisa’s story is a testament to resilience, advocacy, and the power of finding community. Her laughter is infectious, her honesty is refreshing, and her advice for others is invaluable.

Support the show

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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 years
• [13:17] The moment she refused to be dismissed again
• [18:03] Learning boundaries and unlearning hustle culture
• [21:02] How IH impacts dating, friendships, and self-worth
• [30:01] Her experience with medication, including Xywav
• [34:19] Why she'd hit the red button to erase IH

💡 Taya’s voice is powerful, full of laughter and light—and rooted in the truth that rest isn’t a luxury, it’s survival.

🎧 Listen now for a deeply relatable episode about learning to slow down, speak up, and take your life back—nap by nap.

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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 vulnerability. Her candid reflections on depression, dating with chronic illness, and the harsh realities of invisible disabilities will resonate with anyone who’s ever felt like their body betrayed them.

🔹 Chapters:
00:00 – Introduction & Background
04:00 – The Car Crash That Changed Everything
08:00 – Diagnosis: Relief Meets Devastation
12:00 – Comorbidities: Bipolar, CBID, Behçet’s
21:00 – Sleep Struggles, Advocacy & Academic Life
37:00 – Parenting, Future Plans, and Honest Reflections
53:00 – “Would You Press the Red Button?”

This is a powerful reminder that even when life reroutes us, it doesn’t have to end the journey

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

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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 hallucinating on public transport, Cristina shares it all: the scary, the silly, and the soul-shifting.

We also talk:

• [05:44] Misdiagnosis and finding the right doctor
• [08:51] The emotional impact of being finally diagnosed
• [11:05] Medication side effects, sleepwalking, and the helmet joke
• [17:44] Her healing journey through intuitive eating & cooking
• [23:00] How humor helps her reclaim control
• [27:44] Why she wears a bracelet in public
• [34:32] The truth about naps and real-life memory struggles
• [45:48] Would she press the button to remove narcolepsy?

Cristina reminds us that there’s no right way to live with narcolepsy—only your way.

📲 Follow her at @GourmetRecovery on IG & FB.

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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 adults, and people who don’t fit the “classic” profile.

Now leading the Sleep Apnea Squad, Emma is on a mission to raise awareness with Project Sleep’s bold campaign, “Sleep Apnea: Let’s Face It”—a movement designed to highlight real people living with sleep apnea and crush outdated stereotypes.

Highlights:

[08:52] Falling asleep while driving: Emma’s turning point
[16:20] What CPAP therapy doesn’t tell you
[24:50] “Let’s Face It” and sleep apnea stereotypes
[35:47] The deadly risks of going untreated

Bio:

Emma Cooksey is an award-winning patient advocate. She was diagnosed with obstructive sleep apnea at the age of 30, after more than a decade of unexplained health issues. In 2020, Emma launched a weekly podcast, “Sleep Apnea Stories”  to break down stereotypes of sleep apnea while also raising awareness of symptoms and treatment options.

In her current role, as Sleep Apnea Program Manager, Emma runs Project Sleep’s Sleep Apnea Education and Awareness Program. Through this program, she develops new awareness and educational initiatives, to empower people with sleep apnea to seek diagnosis, support, and care. Emma was born and raised in Scotland, holds a Law degree from Aberdeen University, and now lives in Florida with her husband Jason and their two girls.

Tune in for a conversation that’s educational, emotional—a

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