Hypermobility Happy Hour

82 - Meghan O'Rourke on The Invisible Kingdom: Reimagining Chronic Illness

On this episode, Kerry interviews Meghan O’Rourke, an author, poet, editor and podcaster who was diagnosed with hypermobile Ehlers-Danlos Syndrome after many years of navigating the medical system. In 2022, Meghan published The Invisible Kingdom: Reimagining Chronic Illness, a groundbreaking account of her own experience navigating the medical system which became a New York Times best seller. The book is part memoir, part history of the medical system and its biases, part philosophy about the identity of the self and one’s identity while ill, and partly a discussion of the state of scientific research relevant to many chronic illnesses. Links: Meghan O'Rourke's website, available at: https://meghanorourke.com/ Meghan O'Rourke's Substack, available at: https://substack.com/@meghanorourke The Invisible Kingdom: Reimaging Chronic Illness, available at: https://www.amazon.com/Invisible-Kingdom-Reimagining-Chronic-Illness/dp/1594633797

81 - My Hypermobility: New Children's Book on Hypermobility by Leah Pinnington

In this episode, Leah Pinnington discusses My Hypermobility, the children's book she wrote about her daughter's experience with hypermobility. Leah advocates for better awareness about hypermobility in schools and her book has been successful internationally. Links: Instagram: https://www.instagram.com/leahpinnington_author/ My Hypermobility on Amazon: https://www.amazon.com/My-Hypermobility-Leah-Pinnington/dp/1738437205 My Hypermobility at Target: https://www.target.com/p/my-hypermobility-by-leah-pinnington/-/A-91860135

80 - Help! I'm Hypermobile Podcast Host and Hypermobility Specialist Osteopath Alexandra Orfanides

This episode features a discussion with Alex Orfanides, Masters in Osteopathy and Bachelor of Arts (honors), a hypermobility specialist osteopath and content creator who hosts the fantastic podcast Help! I’m Hypermobile. Alex has a unique blend of expertise gained through her prior degree in English literature and her clinical work with elite athletes. She challenges conventional perspectives on clinical outcomes in hypermobile patients and is dedicated to helping individuals with hypermobility (including hypermobile Ehlers-Danlos syndrome) to achieve their goals. Alex’s academic background fuels her commitment to promoting informed consent in healthcare settings, emphasizing the importance of patients understanding not only the “what” but also the “why” when it comes to their experiences and conditions. This dedication to answering the “why” questions has led to the successful establishment of her social media presence, the Hypermobility HQ Discord community, and the Help! I’m Hypermobile podcast. Alex is committed to doing her best to make the world a better place for hypermobile people. A friendly reminder that this podcast is for informational and educational purposes only, it is not advice. If you have questions or are having trouble finding resources or professionals, please feel free to reach out to us at hypermobilityhappyhour@gmail.com Links: Help! I'm Hypermobile podcast available at: https://podcasts.apple.com/us/podcast/help-im-hypermobile/id1691592838 Hypermobility HQ: https://hypermobilityhq.com/contact Instagram: https://www.instagram.com/hypermobilityhq/

79 - Too Flexible to Feel Good Co-Author Celest Pereira on Hypermobility, Chronic Pain & More

This episode features Celest Pereira who is a trained dancer, martial artist, co-author and physiotherapist. She earned her Bachelor of Science degree in Physiotherapy in 2009. Celest loves learning about and discussing anatomy, neuroscience and biomechanics and runs regular education-based workshops where she breaks down scientific research studies and anecdotal evidence from healthcare providers to help educate others about various movement disciplines. Celest is a co-author of the book Too Flexible to Feel Good and she also has a blog, a podcast, various YouTube videos, an active social media presence, and offers private 1 on 1 online science where she focuses on a neuromechanical approach to physiotherapy. A friendly reminder that this podcast is for informational and educational purposes only, it is not advice. If you have questions or are having trouble finding resources or professionals, please feel free to reach out to us at hypermobilityhappyhour@gmail.com https://www.celestpereira.com/ Beginner’s Yoga - Shapes with Weights (Celest Pereira): https://www.youtube.com/watch?v=ZJXEUpBVycY https://www.instagram.com/celestpereirapt/ Too Flexible to Fell Good (book), available at: https://www.amazon.com/Too-Flexible-Feel-Good-Hypermobility/dp/1628604174/ref=sr_1_1?crid=2GSKMQH1YS2Y4&dib=eyJ2IjoiMSJ9.HKAql1iYWO27pOpry3uvh9JjnUPVkzjR5Hm0JzR3xDoABa1qzYNVJSXJlMcGmSN25k6JOWJH3m3CIkIGeiBq69UV6lgFmrEWt8hD1wR9nOu1utB2kUEKM-5-_x9PO0xew-Vd-nquXdgtXziNtcL9IhQAhiACKkEz-XRqCnfj7F2pBMTZFMmEd_hizsMf3M6_20VSeCLFfdl98P7bAW0JdTEA2FwjNfw-4smfBOlWi-w.8GKNhGvYeMMiH7ccaXrTaBXBSt__q0y1TihzDvmkikE&dib_tag=se&keywords=too+flexible+to+feel+good&qid=1712157923&sprefix=too+flexible+%2Caps%2C1230&sr=8-1 Love @ First Science Podcast, available at: https://www.celestpereira.com/podcast

78 - Allysa Seely: USA Paralympian Gold Medalist on Medical Gaslighting and Advocacy Work

Today our guest is paralympic Gold Medalist Allysa Seely. Allysa is a paratriathlon athlete with Ehlers-Danlos Syndrome and related conditions like Chiari II. Beyond her gold medal award, Allysa is also a three-time world paratriathlon champion and a 17-time ITU World Paratriathlon Event medalist with 12 golds, 3 silvers, and 2 bronzes. In 2016 at the Rio Paralympic Games, Allysa made history when she won a gold medal in paratriathlon’s debut as a medal event at the Paralympics. She also competed in track and field at the Rio games where she landed an impressive sixth place finish in the 200m event. Allysa has been featured in ESPN the Magazine’s Body issue and has been dominant in the women’s PTS2 division since the Rio games. In July 2019, Allysa won an ESPY award for Best Female Athlete with a disability. Allysa has struggled with significant health challenges in late 2020 and early 2021 and spent several months in the hospital with endocarditis or severe inflammation of the heart. She was able to return to full time training in the spring and was able to earn a silver medal at the Americas Triathlon Para Championships event on June 27, 2021 in Pleasant Prairie, Wisconsin, a key selection event for the Tokyo Games. Links: https://www.teamusa.com/profiles/allysa-seely-817537 https://www.instagram.com/triallysa