Hypermobility Happy Hour

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)

On this episode, British-Iranian journalist Punteha van Terheyden discusses the recent tragic death of Stephanie Aston in New Zealand and the article Punteha wrote about Steph and Punteha’s own experiences with hypermobility and other medical conditions. Punteha van Terheyden - https://www.vtfeatures.co.uk/ 'Stephanie Aston died after doctors said she was faking her symptoms. I'm not even surprised' - Story by Punteha van Terhayden - https://www.mamamia.com.au/stephanie-aston-death/ People magazine article about Stephanie Aston - https://people.com/ehlers-danlos-new-zealand-stephanie-aston-dies-7966639 Another recent article by Punteha: https://metro.co.uk/2023/10/04/it-costs-a-bomb-but-cannabis-oil-has-allowed-me-to-stand-up-again-19589151/

On this episode, our guest is Dr. Brit Harmon, a Doctor of Physical Therapy who specializes in hypermobility and women’s health. Dr. Brit works to help women to feel more empowered in their ability to create sustainable and obtainable shifts in their bodies and minds. Her background in Hypermobility, the female cycle, holistic health, and the pelvic floor has allowed her to connect the dots in helping women to more fully understand how to care for themselves. Links: https://www.bloomembody.com/ https://www.bloomembody.com/free-resources

On this episode, Donna Irene talks about her experience with hypermobile Ehlers-Danlos Syndrome and related conditions. Donna is a travel photographer with hEDS from Miami, FL and soon to be in Chattanooga, Tennessee. She picked up a camera at the age of 13 and since then her camera has taken her to 5 continents and 40 countries. Since her diagnosis in 2022 she has become an advocate for women with invisible disabilities and shares about her journey on social media. Links: Instagram: https://www.instagram.com/chronicandcapable TikTok: chronicandcapable Dr. Rodney Grahame quote: https://www.the-rheumatologist.org/article/function-despite-pain/4/?singlepage=1 Dermal fibroblast article: https://pubmed.ncbi.nlm.nih.gov/36552803/

Content advisory: This episode contains discussion of highly sensitive topics including suicide and allegations of child abuse. Please exercise listener discretion. On this episode, Kerry interviews Donna Sullivan, a patient advocate with the organization TCAPP, The Coalition Against Pediatric Pain. She is a graduate of Providence College and has worked for more than two decades in media, communications and marketing with some of the world’s biggest brands. Donna uses her skills to help TCAPP raise awareness of the needs of children living with complex pain. She and her husband have three children diagnosed with Ehlers-Danlos Syndrome, POTS, and complex regional pain syndrome. Donna's goal is to give voice to the real struggles that complex pain families face in trying to get experienced care and effective treatment. Links: TCAPP Website https://tcapp.org/ TCAPP Summer Pain Camp https://tcapp.org/summer-pain-camp/ Fundraiser for Documentary: https://openeyepictures.com/complicated https://www.pathwaystotrust.org/initiatives https://www.thecut.com/2022/10/child-abuse-munchausen-syndrome-by-proxy.html When the Helping Hand Hurts: How Medical Child Abuse Charges Are Undermining Parents’ Decision Making Rights over Children’s Medical Care by Maxine Eichner https://aaml.org/wp-content/uploads/MAT102-1.pdf

Mitch Martow returns to the Hypermobility Happy Hour to talk about his documentary and advocacy efforts. Links Bend or Break documentary https://youtu.be/5toRNvFug3Y Instagram (@mitchmartow) https://instagram.com/mitchmartow?igshid=MTIyMzRjYmRlZg== Bend or Break Instagram (@_bend_or_break_) https://instagram.com/_bend_or_break_?igshid=MTIyMzRjYmRlZg== https://www.cnn.com/videos/health/2022/12/16/ehlers-danlos-syndrome-patient-stories-contd-lon-orig.cnn

On this episode, Kalin Johnson, a healthcare provider, patient advocate and entrepreneur, discusses her path to connecting the dots of Hypermobility and neurodivergency in her own life and building a patient advocacy practice. Kalin shows high-achieving, neurodivergent, & hypermobile individuals how to “unmask their health,” and feel their best through concierge whole person care. As a licensed clinical pharmacist, functional medicine specialist, healthcare advocate, and neurodivergent mentor, she bridges the gap between mental and physical health through her professional and personal experience. Kalin brings a unique and enthusiastic perspective to her private practice. A perspective gained from living life as an LGBTQIA+, ADHD and autistic individual with hypermobile Ehlers-Danlos Syndrome. She cares, coaches, and mentors with passion and an insatiable appetite to help other neurodivergent and hypermobile individuals navigate a world that wasn’t built with them in mind. If you’re interested in working with Kalin one-on-one, signing up for her newsletter, or attending one of her free webinars, head over to her website (kalinjohnson.com).

On this episode, Kalin Johnson, a healthcare provider, patient advocate and entrepreneur, discusses her path to connecting the dots of Hypermobility and neurodivergency in her own life and building a patient advocacy practice. Kalin shows high-achieving, neurodivergent, & hypermobile individuals how to “unmask their health,” and feel their best through concierge whole person care. As a licensed clinical pharmacist, functional medicine specialist, healthcare advocate, and neurodivergent mentor, she bridges the gap between mental and physical health through her professional and personal experience. Kalin brings a unique and enthusiastic perspective to her private practice. A perspective gained from living life as an LGBTQIA+, ADHD and autistic individual with hypermobile Ehlers-Danlos Syndrome. She cares, coaches, and mentors with passion and an insatiable appetite to help other neurodivergent and hypermobile individuals navigate a world that wasn’t built with them in mind. If you’re interested in working with Kalin one-on-one, signing up for her newsletter, or attending one of her free webinars, head over to her website (kalinjohnson.com).

In this episode, Taylor Goldberg, DC, discusses her practice as a hypermobility coach and her perspectives on various aspects of hypermobility spectrum conditions. Taylor is a chiropractor who works with hypermobile individuals and has a unique perspective through her education and her own experiences with hypermobility. www.hypermobilechiro.com Instagram: @thehypermobilechiro

On this episode, returning guest Savita Sandhu from Savvy Dietetics located in Brisbane, Australia discusses diet, POTS, and hypermobility. Savita received her Bachelor Degree in Nutrition and Dietetics with Honours at the Queensland University of Technology and underwent postgraduate training with the Australasian College of Nutritional and Environmental Medicine. Savita also has an amazing instagram page at hypermobility.dietitian where she provides information and resources about food and micronutrients for hypermobile people. Links: https://www.savvydietetics.com.au https://www.instagram.com/hypermobility.dietitian/?hl=en