Advocacy Series: S1E6 Meet the Woman Who Created the World's First IH Nonprofit

Leave a review!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.00:00Welcome to the Advocacy Series01:08Meet Michelle Chadwick from Brisbane, Australia03:47Michelle's bio: founder of Hypersomnias Australia07:34What is IH, and Michelle's first symptoms at age 1110:44The 20-year road to diagnosis12:05Getting diagnosed, but getting no support15:01Building lifestyle strategies from scratch18:57The meeting that led to founding Hypersomnias Australia20:26Obstacles, stigma, and "I might not do it again"23:29IH vs. narcolepsy, explained simply27:17The government funding gap no one talks about30:59Workplace disclosure: why so many can't work in their trained field37:37Getting researchers to finally take IH seriously40:30Michelle's honest advice for newly diagnosed advocates44:20Morning routine hacks for sleep inertia47:30The Red Button QuestionIf this episode resonated with you, share it with someone who needs to hear it — especially anyone newly diagnosed and searching for the support that didn't exist for Michelle either. Subscribe, leave a review, and join our community. Happy napping, everyone.Support the showSubscribe for more inspiring episodes, share to raise awareness, and join the conversation by sharing your experiences.Follow and support Narcolepsy Navigators:www.napsforlife.comInstagram: https://www.instagram.com/narcolepsynavigatorspodcast/Facebook: https://www.facebook.com/people/Narcolepsy-Navigators/61558638497300/LinkedIn: https://www.linkedin.com/company/narcolepsy-navigators-podcastTikTok: https://www.tiktok.com/@narcolepsynavigatorsYoutube: https://www.youtube.com/@NarcolepsyNavigatorsPodcast ***If you find these symptoms relatable, please seek medical advice.***