Imagine being the youngest person ever diagnosed with narcolepsy at just three years old. Today, we're honoured to share the extraordinary journey of Mathilda, who has spent her life battling and thriving despite this complex condition. Joined by our Marketing Manager Iris, also living with narcolepsy type 1, we dive into Mathilda's world—from her early diagnosis to the release of her mother Claire's heartfelt memoir, "Waking Mathilda."

In this deeply personal episode, Mathilda opens up about the emotional challenge of reading her own story through her mother's eyes and the resilience it takes to navigate life with narcolepsy and cataplexy. Hear firsthand how she has managed to maintain her sense of self and privacy amidst the attention brought by her unique medical journey. Whether you're familiar with narcolepsy or just learning, Mathilda's story is sure to inspire and enlighten.

From her family dynamics to her personal thoughts on privacy and public attention, Mathilda shares her unique perspective for the first time. Join us for this inspiring episode that promises to educate, move, and resonate with anyone touched by narcolepsy.

Chapter Timestamps

(03:00) - Mathilda's Early Diagnosis
(07:00) - Reading "Waking Mathilda"
(17:00) - Maintaining Privacy and Self-Identity
(21:00) - Family Dynamics
(25:00) - Public Speaking and Sharing Her Story
(30:00) - Final Thoughts

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

Join us on this heartwarming episode of Narcolepsy Navigators as we welcome our special guests Laura, an experienced animal foster parent from Illinois, and her narcoleptic dog, Toast.

From being a breeder dump to becoming a beloved family member, Laura's journey is filled with challenges, adaptations, and the joy of raising a special needs pet. Laura recounts her initial struggles with understanding Toast's condition, the unique measures taken to manage his narcolepsy, and the joyous connections he's fostered within their community.

Laura provides valuable insights into daily routines designed to manage Toast's cataplectic attacks, from utilizing white noise at bedtime to specialized feeding techniques. Gated stairs, supervised outdoor activities, and puzzle bowls are just a few of the adjustments that have helped Toast thrive. Laura emphasizes the importance of exposing Toast to various environments, despite criticism, to better manage his triggers.

This discussion highlights the significance of allowing special needs pets to live fulfilling lives and the gradual training required for them to handle their triggers effectively. We also touch on the broader implications and common misconceptions surrounding narcoleptic pets, advocating for greater awareness and empathy.

As we wrap up, we focus on the broader narcoleptic community and the quality of life for both humans and animals with narcolepsy and cataplexy. Laura shares her experiences and the profound joy that special needs pets bring into our lives, dispelling common misconceptions and advocating for awareness. We explore the supportive role of social media, the potential for Toast to become a therapy dog, and the critical importance of community support and shared experiences. Tune in for an inspiring conversation that champions understanding and compassion for all beings with special needs.

Chapter Timestamps

(00:10) - Narcolepsy Navigators
(08:46) - Managing Narcolepsy in Dogs
(17:00) - Exploring Narcolepsy in Dogs
(23:40) - Quality of Life for Narcoleptic Dog
(31:36) - Cataplexy and Narcolepsy in Humans
(36:41) - Rescuing Special Needs Animals
(49:22) - Expansion of Narcoleptic Dog Community
(55:46) - Supporting Animals With Special Needs

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Follow Toast on Social Media:

Instagram: @toastthenarcoleptic

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

Experience the raw and transformative journey of Sarah Duncan, a courageous 29-year-old from Oregon, as she navigates the complexities of life with narcolepsy. From her pre-med college days filled with relentless fatigue to the frustrating misdiagnoses that dismissed her symptoms as mere anxiety and depression, Sarah's story highlights the often-overlooked struggles of those living with this condition. This episode of Narcolepsy Navigators sheds light on the emotional and physical challenges Sarah faced, emphasizing the critical role of self-advocacy in the pursuit of proper medical recognition and treatment.

Discover the profound impact of Sarah’s narcolepsy diagnosis on her aspirations of becoming a doctor. Working in a beloved hospital, she encountered the harsh realities of America's medical system, often leaving patients to fend for themselves. Sarah's narrative not only underscores the systemic barriers in medical education and practice but also explores the broader challenges disabled individuals face in both educational and professional settings. Learn about Sarah's difficult decisions and the alternative paths she pursued to create a fulfilling life despite the limitations imposed by her condition.

Explore the nuanced interplay between narcolepsy, ADHD, and the endocrine system as Sarah details her journey towards managing her symptoms. From the significance of simple accommodations to the emotional liberation of embracing her identity, Sarah's experience is a testament to resilience and self-discovery. This episode delves into the societal pressures and stigmatization around disabilities, emphasizing the importance of embracing one's identity and advocating for necessary resources.

Join us for an eye-opening conversation that challenges societal norms and celebrates the strength found in vulnerability.

CHAPTER TIMESTAMPS

(00:10) Navigating Life With Narcolepsy
(04:30) Misdiagnosis and Medication Pressure
(11:23) Navigating Medical School With Narcolepsy
(17:34) Navigating Accommodations in Medical School
(20:18) Navigating Disability in Medical Education
(31:31) Exploring Sleep-Inducing Aromatherapy Tea
(36:04) Narcolepsy and Body Regulation
(39:05) Exploring Asexuality and Disability in Relationships
(43:39) Evolution of Disability Identity
(51:22) Reevaluating Disability and Support
(56:33) Understanding Disabling Labelling and Ableism

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Follow Sara on Social Media:

Instagram: @duncanpnw
TikTok: @missalexandria

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Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/
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LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast

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

Can navigating life with narcolepsy impact your mental health and career? Join us on Narcolepsy Navigators as we explore these pressing questions with our special guest, Christine from Northern Ireland. You'll hear firsthand about her journey with narcolepsy type 1 and cataplexy, and how symptoms manifest uniquely in her jaw. We share our personal struggles with exhaustion and anxiety, emphasizing the critical need for balance to avoid burnout. This episode sheds light on the emotional toll and personal growth that come from managing a misunderstood condition.

We also address the often-overlooked challenge of obtaining a proper narcolepsy diagnosis, from adolescence through professional life. I recount my own experiences of debilitating fatigue and the misinterpretations by medical professionals. The episode includes practical tips for self-advocacy, such as using handwritten notes and journals to communicate symptoms effectively. Our conversation underscores the importance of persistence in securing a diagnosis and the vital role of organizational strategies in managing daily life with narcolepsy.

Chapter Timestamps

(00:10) Living With Narcolepsy and Mental Health
(14:36) Navigating Narcolepsy Diagnosis Challenges
(21:15) Managing Narcolepsy Challenges and Medications
(35:35) Understanding and Supporting Narcolepsy Patients
(42:21) Supporting Narcolepsy Patients Through Healthcare
(54:00) Navigating Career Changes With Narcolepsy
(57:22) Exploring Narcolepsy and ADHD Connections

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Follow Christine on Social Media:

• https://www.instagram.com/thegirlwhoranawayinhersleep/

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• Instagram: https://www.instagram.com/narcolepsynavigatorspodcast/~
• Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/
• LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcast

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

Can you imagine trying to balance parenting, a creative passion, and a chronic sleep disorder? Join us on Narcolepsy Navigators as we explore this challenging reality through the inspiring life of Katie, a 30-year-old mom from South Dakota. Diagnosed with idiopathic hypersomnia (IH) in early 2022, Katie shares her journey of self-discovery and the long path to understanding her incessant sleepiness. She opens up about how her daily interactions were impacted and the adjustments she made to manage her condition while raising a young child and nurturing her love for sewing and quilting.

In our in-depth discussion, we tackle the complexities of medication approval, sleep inertia, and the role of energy drinks in staying functional. Katie reveals her practical strategies for managing day-to-day responsibilities, emphasizing the unique pressures parents face with these conditions. She also discusses the importance of diet and external support, particularly in meal preparation and maintaining a balanced lifestyle, underscoring how these elements can mitigate the symptoms of IH.

Communication and support networks play a crucial role in living with a chronic condition. Katie candidly talks about how she and her husband navigate parenting their energetic four-year-old while managing her medication and safety concerns. We explore the emotional toll and the significance of self-care, highlighting the vital support from family and the online community. Finally, Katie reflects on balancing social connections, creative passions, and the necessity for empathy and understanding for those living with chronic sleep disorders. Tune in for a heartfelt conversation that sheds light on the nuanced life of a mother living with idiopathic hypersomnia.

Chapter Timestamps

(00:00) Living With Idiopathic Hypersomnia
(08:15) Navigating Medication and Energy Drinks
(18:42) Parenting With Idiopathic Hypersomnia Challenges
(24:05) Navigating Communication and Support Networks
(29:39) Balancing Work, Creativity, and Friendship
(43:19) The Creative Struggles of Idiopathic Hypersomnia
(50:07) Caring for Mother With Hypersomnia

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

What if a sleep study could be the key to unlocking a 13-year mystery? Join us as we sit down with Henry from Queens, New York, who shares his deeply personal journey from experiencing his first symptoms of narcolepsy type 2 in 1996 to finally receiving a diagnosis in 2009.

In this episode, Henry opens up about his trial-and-error process with medications, to experiencing the highs and lows of finding the right combination, including his experiences with Xyrem. Learn how narcolepsy impacted his work life, requiring adaptable environments and a supportive network to help him maintain a sense of normalcy and identity.

Tune in as Henry discusses practical coping mechanisms for dealing with symptoms like brain fog and hallucinations and highlights the invaluable support of community groups. This episode is a testament to the power of awareness, education, and unwavering support in overcoming the obstacles posed by narcolepsy.

Chapters:

• (00:06) - Narcolepsy Awareness
• (07:21) - Managing Narcolepsy and Work Life
• (13:31) - Challenges of trying to adopt with Narcolepsy
• (19:04) - Managing Narcolepsy

Highlights:

• (02:51 - 04:01) Journey to Narcolepsy Diagnosis (70 Seconds)
• (12:31 - 13:31) Narcolepsy and Self-Identity (60 Seconds)
• (16:32 - 17:38) Support and Understanding of Narcolepsy (66 Seconds)
• (21:57 - 24:08) Understanding and Managing Narcolepsy (131 Seconds)
• (29:16 - 30:58) The Red Button (102 Seconds)

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https://www.facebook.com//Narcolepsy-Navigators

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

Nobody wants to embark on a journey across the turbulent seas of narcolepsy, but Natalie, a German mother and teacher, offers her moving story of doing just that. In her world, the emergence of narcolepsy in her late twenties was only the start of a journey marked by delayed diagnosis, developing cataplexy, and the struggle with ineffective sleep apnea therapies. This episode gives us access to her universe. Her narrative is not limited to the difficulties she faced; it also explores the resiliency needed to balance her rigorous professional obligations with the subtleties of parenting an autistic child.

Throughout our heartfelt conversation, the spectrum of emotions and adjustments Natalie has faced becomes apparent. She clarifies the challenges teachers face on the job, including the social ramifications of medicine, the difficulties of maintaining safe driving practices, and the difficult route to treatment accessibility in Germany.

Natalie's story sheds light on the transformative effect of lifestyle adjustments and the comfort found in support networks in a society that frequently takes pride in its unwavering productivity. Her choice to treat her narcolepsy non-medically resulted in major life changes, such as changes in her diet and employment, demonstrating her dedication to putting her health first.

Chapter Timestamps

• (03:52 - 05:03) Discovery of Narcolepsy Symptoms
• (08:00 - 10:11) Managing Cataplexy as a Teacher
• (11:24 - 12:30) Understanding Narcolepsy and Supportive Environment
• (16:58 - 17:48) Managing Epilepsy in Germany
• (21:58 - 23:18) Parenting and Narcolepsy
• (30:04 - 31:33) Managing Nerve Pain From Electromagnetic Radiation
• (33:49 - 35:18) Collaboration Between Doctors and Patients
• (37:16 - 39:08) Embracing and Learning From Narcolepsy

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

Discover the untold stories of life with narcolepsy as Sakhara Johnson joins us for an intimate conversation about her journey. We peel back the curtain on her day-to-day battles, from the initial misdiagnoses and the arduous path to discovering she had severe narcolepsy, to the ongoing struggles with treatments and their impact on her personal life. Sakhara doesn't hold back in sharing the gritty details of using a CPAP machine, undergoing surgeries, and the toll these take on her academic and social experiences. Her resilience in the face of such trials is nothing short of inspiring, offering a beacon of hope for anyone facing similar hardships.

This episode isn't just Sakhara's narrative; it's a critical examination of the broader issues at play within the narcolepsy community, especially for people of color. We probe the need for better representation and participation in events like World Narcolepsy Day, discussing the complexities of cultural stigmas and the barriers that hinder support. Sakhara opens up about her own path to acceptance and the role of community and faith in navigating the challenges of this often misunderstood condition.

Chapter Timestamps

• (00:06) - Living With Narcoleptic Challenges
• (13:35) - Representation and Acceptance of Narcolepsy
• (23:21) - Impact of Narcolepsy on Relationships
• (28:53) - Navigating Relationships With Narcolepsy
• (39:45) - Navigating Narcolepsy in Dating

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