S1E12 Mathilda: Thriving with Narcolepsy from Age Three Artwork

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.

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Narcolepsy Navigators Podcast

S1E12 Mathilda: Thriving with Narcolepsy from Age Three

September 22, 2024 • Kerly Bwoga • Season 1 • Episode 12

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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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