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...
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...
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...
S2E12 Jacquie & IH: The Reality Beyond Just ‘Tired’
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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...
S2E11 Narcolepsy, Mental Health, and Self-Love: A Conversation with Dawn
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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...
S2E10 Storytelling with a Purpose: How Tre Burge is Making Waves
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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 r...
S2E9 Jamie Nicole: Turning Diagnosis into Purpose
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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 r...
S2E8 Sleeping for Weeks: Imaarl’s Story with KLS
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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...
S2E7 Dreams, Hallucinations, and Chloe's Life with Narcolepsy
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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...
S2E6 20 Years to Clarity: Glenn's Narcolepsy Experience
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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...
S2E5 Rachel’s Superpower: Advocacy Through Sleep and Song
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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...
S2E4 Redefining Rest: Haley’s Resilience with IH and Chronic Illnesses
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Years ago, Hayley Wall made the bold decision to transition from a demanding hospital role to a flexible occupational therapy position in pediatric home health. This change not only suited her professional skills but also provided the adaptability needed to manage her idiopathic hypersomnia (IH). In this episode, Hayley opens up about how this career shift has empowered her to effectively balance her health with her work and personal life. We also hear from our co-host Liz, who shares her anticipation of an upcoming family event and reflects on her own journey living with...
S2E3 Living with Narcolepsy & Autism: Rahmat's Path
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Rahmat Farina's journey with narcolepsy began at the age of 20, and it has been marked by resilience and introspection. Imagine trying to maintain your education and daily life while being suddenly overtaken by sleep attacks and sleep paralysis—this was Rahmat's reality. His initial struggles were compounded by disbelief from his family, but understanding grew as his condition became more visible to those around him. With a background in psychology, Rahmat was well-equipped to seek the right medical guidance, shedding light on the perseverance required to navigate the unknown and find answers. His story is...
