Hypermobility Happy Hour

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

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

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 [email protected]

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/

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 [email protected]

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

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

On this episode, our guest is Andy Hsieh of Movement Reborn located in San Diego, CA. Andy is a certified personal trainer through the American Council of Exercise, as well as a specialist in neurokinetic training. Andy runs Movement Reborn, an in-person personal training practice that also has some helpful YouTube videos for those who are not in the greater San Diego area. Movement Reborn’s YouTube channel has some videos about hypermobility, one of which has been seen nearly sixty thousand times as of the time of this recording.

Andy discusses nervous system regulation, movement for hypermobile people and people with EDS, neurokinetic treatment, resources that can be helpful for movement protocols and more.

Links:

Movement Reborn https://movementreborn.com/

YouTube Video: Exercises and Tips for Hypermobility - Stretch Less, Stabilize More. available at: https://www.youtube.com/watch?v=-CzIsYElN0w&t=27s

YouTube Video: Stabilizing the Hip: Exercises for Hypermobility and EDS, available at: https://www.youtube.com/watch?v=RuWzU4w2oYw

Neurokinetic Therapy https://neurokinetictherapy.com/about/david-weinstock/

On this episode, we are joined by Dr. Rita White, Doctor of Physical Therapy. Rita is a pelvic health physical therapist with over 10 years of experience helping people reconnect to their body so they can overcome pain. Her areas of expertise include pelvic health and pain conditions, especially hypermobile Ehlers-Danlos Syndrome (hEDS)/ Hypermobility Spectrum Disorders (HSD) and Postural Orthostatic Tachycardia Syndrome (POTS).

Dr. White owns her own practice, Intrinsic Physical Therapy & Wellness, a specialty PT clinic in Minneapolis, Minnesota, specifically designed for people living with complex, chronic conditions. She is passionate about providing a space for people to feel seen and heard in their healthcare needs no matter how complex or rare their symptoms may be. Rita combines her personal experience of living with chronic pain and fatigue with her professional expertise to help people find lasting relief from symptoms.

Links:

https://www.intrinsic-pt.com/

Instagram: @theintrinsicpt

Paper on the “presentation and physical therapy management of upper cervical instability in patients with symptomatic generalized joint hypermobility: International expert consensus recommendations”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9893781/

On this episode, hypermobile couple Katie Goss and Andrew Dettelbach discuss their experiences living with hypermobility as well as their insights from working with hypermobile people through their practice and the organization they founded: Whealth.

Links:

https://spreadwhealth.com/overcome-pain

https://www.instagram.com/whealth

https://www.facebook.com/spreadwhealth

https://www.youtube.com/spreadwhealth

In this episode, Dr. Brian Cunningham (The Swim Doc) talks about coaching and working with swimmers of all ages, strengths, and abilities (including hypermobile swimmers). Dr. Cunningham is an experienced physical therapist and swimmer who teaches swimmers about the specific muscles they need to engage as well as the habits and strategies of elite athletes. He has worked with swimmers at many levels from physical therapy to the USA Olympic Swim Team. Dr. Cunningham also reflects on his own personal experience with hypermobility as well as his professional insights gleaned from working with many hypermobile people.

Links:

https://www.theswimdoc.com/#/

Instagram: https://www.instagram.com/drbriancunningham

Article by Dr. Cunningham “Hypermobility in Swimmers” https://www.streamlineteams.org/post/hypermobility-in-swimmers

On this episode, our guest is Jo Southall, Occupational Therapist and Patient Advocate. Jo is an Independent Occupational Therapist and an expert patient with many years of experience self-managing complex health conditions. Jo began working life in the sport and Outdoor Adventure industries. After being diagnosed with Hypermobile Ehlers Danlos Syndrome, Jo returned to study and gained a BSc degree in Occupational Therapy from the University of Northampton. Jo was named Changemaker Student of the Year for 2016 in connection with their work in helping to bring wheelchair basketball to the university, their volunteer work with the Hypermobility Syndromes Association in the UK (HMSA) and writing their blog about their own experiences and practice. Jo's final placement also made her the UK’s first Occupational Therapist to work in the travel and tourism industry. Jo is also a pioneer in remote placement work as well.

Jo completed her degree in September 2016 after 5 years, thousands of miles of travel, 57 nights in 4 different hospitals, 5 different A&Es (some more than once), 4 ambulance trips, countless hospital and GP appointments, 3 work placements, living in student accommodation, hotels and friends’ houses.

Jo has been self employed working via videochat since obtaining qualification and they continue to volunteer for the HMSA. Jo is also on the medical advisory board for the HMSA. Jo's regular Occupational Therapy work consists mainly of 1:1 appointments with clients and their loved ones. Jo is a regular guest lecturer and leads webinars and training sessions both in the UK and abroad. Recently, Jo started down the Practice Educator route and you can find out more about that in their Practice Educator Diary (link below).

Links:

https://jboccupationaltherapy.co.uk/

https://jboccupationaltherapy.co.uk/category/occupational-therapy/practice-educator-diary/

https://www.instagram.com/jboccytherapy/?hl=en

Jo Southall on The Rest Room Podcast: Pacing: A guide for people who’d rather be doing other things on Apple Podcasts, available at: https://podcasts.apple.com/gb/podcast/pacing-a-guide-for-people-whod-rather-be-doing-other-things/id1218852479?i=1000550501384

(This is the first episode in a series)

Jo Southall's Youtube channel available at: https://www.youtube.com/@JBOccyTherapy

Jo Southall on workplace adjustments: https://www.youtube.com/watch?v=3yjyuGfxTY8

Jo Southall on occupational therapy: https://www.youtube.com/watch?v=_NnWsZszG6g

Article on the "Siberian Ice Princess" Mummified Remains:

D.I. Abrams, M.D., Integrating Cannabis Into Clinical Care, Curr. Oncol. 2016, available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4791148/ (see introduction)