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תוכן מסופק על ידי HypermobilityHH. כל תוכן הפודקאסטים כולל פרקים, גרפיקה ותיאורי פודקאסטים מועלים ומסופקים ישירות על ידי HypermobilityHH או שותף פלטפורמת הפודקאסט שלהם. אם אתה מאמין שמישהו משתמש ביצירה שלך המוגנת בזכויות יוצרים ללא רשותך, אתה יכול לעקוב אחר התהליך המתואר כאן https://he.player.fm/legal.
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38 - Ryann Mason (chronically_ry), Nurse, Advocate, and Miss Wheelchair Virginia 2020-2021
Manage episode 319791798 series 2817872
תוכן מסופק על ידי HypermobilityHH. כל תוכן הפודקאסטים כולל פרקים, גרפיקה ותיאורי פודקאסטים מועלים ומסופקים ישירות על ידי HypermobilityHH או שותף פלטפורמת הפודקאסט שלהם. אם אתה מאמין שמישהו משתמש ביצירה שלך המוגנת בזכויות יוצרים ללא רשותך, אתה יכול לעקוב אחר התהליך המתואר כאן https://he.player.fm/legal.
On this episode, Kerry interviews Ryann Mason. Ryann is a nurse, advocate, sex educator, athlete, activist, and Ehlers-Danlos syndrome patient known on instagram as chronically_ry who is involved in a number of projects, many of which involve spreading awareness about the need for increased visibility for disabled persons and better accessibility in the media and in society at large. Ryann was crowned Miss Wheelchair Virginia 2020 and 2021–a role that has allowed her to promote disability education and awareness. She was also recently interviewed by Forbes magazine in an article that discussed her work with Miss America, Camille Schrier. A Rare Disorder Linked Miss America and Miss Wheelchair Virginia: Now They’re Banding Together to Help the Disability Community (Forbes Magazine) December 1, 2020 https://www.forbes.com/sites/allisonnorlian/2020/12/01/a-rare-disorder-linked-miss-america-and-miss-wheelchair-virginia-now-theyre-banding-together-to-help-the-disability-community/?sh=309a68475e48 Ryann Mason (chronically_ry) https://www.instagram.com/chronically_ry/
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66 פרקים
Manage episode 319791798 series 2817872
תוכן מסופק על ידי HypermobilityHH. כל תוכן הפודקאסטים כולל פרקים, גרפיקה ותיאורי פודקאסטים מועלים ומסופקים ישירות על ידי HypermobilityHH או שותף פלטפורמת הפודקאסט שלהם. אם אתה מאמין שמישהו משתמש ביצירה שלך המוגנת בזכויות יוצרים ללא רשותך, אתה יכול לעקוב אחר התהליך המתואר כאן https://he.player.fm/legal.
On this episode, Kerry interviews Ryann Mason. Ryann is a nurse, advocate, sex educator, athlete, activist, and Ehlers-Danlos syndrome patient known on instagram as chronically_ry who is involved in a number of projects, many of which involve spreading awareness about the need for increased visibility for disabled persons and better accessibility in the media and in society at large. Ryann was crowned Miss Wheelchair Virginia 2020 and 2021–a role that has allowed her to promote disability education and awareness. She was also recently interviewed by Forbes magazine in an article that discussed her work with Miss America, Camille Schrier. A Rare Disorder Linked Miss America and Miss Wheelchair Virginia: Now They’re Banding Together to Help the Disability Community (Forbes Magazine) December 1, 2020 https://www.forbes.com/sites/allisonnorlian/2020/12/01/a-rare-disorder-linked-miss-america-and-miss-wheelchair-virginia-now-theyre-banding-together-to-help-the-disability-community/?sh=309a68475e48 Ryann Mason (chronically_ry) https://www.instagram.com/chronically_ry/
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66 פרקים
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Hypermobility Happy Hour
1 81 - My Hypermobility: New Children's Book on Hypermobility by Leah Pinnington 36:05
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36:05In 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…
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Hypermobility Happy Hour
1 80 - Help! I'm Hypermobile Podcast Host and Hypermobility Specialist Osteopath Alexandra Orfanides 58:06
58:06
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58:06This 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/…
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Hypermobility Happy Hour
1 79 - Too Flexible to Feel Good Co-Author Celest Pereira on Hypermobility, Chronic Pain & More 54:31
54:31
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54:31This 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…
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Hypermobility Happy Hour
1 78 - Allysa Seely: USA Paralympian Gold Medalist on Medical Gaslighting and Advocacy Work 52:19
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52:19Today 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…
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Hypermobility Happy Hour
1 77 - Movement Approaches, Nervous System Regulation & More (with Andy Hsieh, CPT-ACE) 53:30
53:30
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53:30On 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/…
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Hypermobility Happy Hour
1 76 - Nervous System Regulation, Pelvic Health & More (Dr. Rita White DPT) 49:24
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49:24On 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/…
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Hypermobility Happy Hour
1 75 - Whealth - Hypermobile Couple Katie Goss and Andrew Dettelbach 1:00:23
1:00:23
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1:00:23On 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…
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Hypermobility Happy Hour
1 74 - Dr. Brian Cunningham, DPT (The Swim Doc) on Swimming & Hypermobility 1:17:17
1:17:17
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1:17:17In 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…
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Hypermobility Happy Hour
1 73 - Occupational Therapist Jo Southall on Pacing, Patient Advocacy, Dark Age Medicine & More 49:43
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49:43On 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)…
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Hypermobility Happy Hour
1 72 - Remembering Stephanie Aston - with Punteha van Terheyden 38:13
38:13
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38:13On 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/…
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Hypermobility Happy Hour
1 71 - Hormones, Pelvic Floor and Hypermobility: Dr. Brit Harmon (PT) 42:41
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42:41On 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…
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Hypermobility Happy Hour
1 70 - Highly Sensitive People, Neurodivergency, ADHD & Advocacy: Donna Irene 1:00:07
1:00:07
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1:00:07On 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/…
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Hypermobility Happy Hour
1 69 - Donna Sullivan (TCAPP) - Supporting Children and Families Impacted by EDS, Hypermobility & More 1:10:29
1:10:29
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1:10:29Content 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 families with complex pain face in trying to get appropriate care and 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…
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Hypermobility Happy Hour
1 68 - Mitch Martow Update on Advocacy & More 48:26
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48:26Mitch 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…
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Hypermobility Happy Hour
1 67 - Kalin Johnson (Part 2) Advocacy, Neurodivergency & More 38:27
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38:27On 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).…
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