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It took Michelle Chadwick 20 years to get diagnosed with idiopathic hypersomnia (IH) and when she finally did, she found almost nothing online to help her make sense of it. So she built it herself.
In this Advocacy Series episode, hosts Kerly and Christine talk with Michelle Chadwick, founder of Hypersomnias Australia and creator of the world's first Global Idiopathic Hypersomnia Awareness Week, about the two-decade road to diagnosis, the funding gap no government will close, the medical record that still says the wrong diagnosis, and the honest truth about what advocacy actually costs.
About The Guest:
Michelle Chadwick is a global advocate for people living with sleep disorders, with both a personal and professional interest in the space. She lives with idiopathic hypersomnia (IH), and in 2013 founded Hypersomnias Australia — the world's first nonprofit dedicated to IH — alongside the Global Idiopathic Hypersomnia Awareness Week and Australia's IH Patient Registry. She chairs Sleep Disorders Australia, sits on the Australian Sleep Association's Disorders of Central Hypersomnolence Working Group and the Global Sleep Consortium Expert Working Group, and has spoken at government hearings worldwide to advocate for better research, diagnosis, and care.
00:00
Welcome to the Advocacy Series
01:08
Meet Michelle Chadwick from Brisbane, Australia
03:47
Michelle's bio: founder of Hypersomnias Australia
07:34
What is IH, and Michelle's first symptoms at age 11
10:44
The 20-year road to diagnosis
12:05
Getting diagnosed, but getting no support
15:01
Building lifestyle strategies from scratch
18:57
The meeting that led to founding Hypersomnias Australia
20:26
Obstacles, stigma, and "I might not do it again"
23:29
IH vs. narcolepsy, explained simply
27:17
The government funding gap no one talks about
30:59
Workplace disclosure: why so many can't work in their trained field
37:37
Getting researchers to finally take IH seriously
40:30
Michelle's honest advice for newly diagnosed advocates
44:20
Morning routine hacks for sleep inertia
47:30
The Red Button Question
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***If you find these symptoms relatable, please seek medical advice.***