Hypermobility Happy Hour: Recent Episodes
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Hypermobility Happy Hour is the first podcast exclusively dedicated to discussing hypermobility conditions including hypermobile Ehlers-Danlos Syndrome.
Guests on the Hypermobility Happy Hour have included world renowned physicians in the field of hypermobility disorders, advocacy experts, leaders of global EDS organizations, and a United States ambassador.
Listen in as we examine a wide range of topics, including treatment options for hypermobility disorders and ways to improve the doctor-patient relationship.
The information provided on this podcast is for educational purposes only and not for the diagnosis or treatment for any individual. Hypermobility disorders can be complex and difficult to treat and it is extremely important to work with trained medical specialists for any diagnosis or treatment.
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/1738437205My 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 hypermobilityhappyhour@gmail.comLinks:Help! I'm Hypermobile podcast available at: https://podcasts.apple.com/us/podcast/help-im-hypermobile/id1691592838Hypermobility HQ: https://hypermobilityhq.com/contactInstagram: 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 hypermobilityhappyhour@gmail.comhttps://www.celestpereira.com/Beginner’s Yoga - Shapes with Weights (Celest Pereira): https://www.youtube.com/watch?v=ZJXEUpBVycYhttps://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=8-1Love @ 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-817537https://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=27sYouTube Video: Stabilizing the Hip: Exercises for Hypermobility and EDS, available at: https://www.youtube.com/watch?v=RuWzU4w2oYwNeurokinetic 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: @theintrinsicptPaper 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-painhttps://www.instagram.com/whealthhttps://www.facebook.com/spreadwhealthhttps://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/drbriancunninghamArticle 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=enJo 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/@JBOccyTherapyJo Southall on workplace adjustments: https://www.youtube.com/watch?v=3yjyuGfxTY8Jo Southall on occupational therapy: https://www.youtube.com/watch?v=_NnWsZszG6gArticle 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-7966639Another 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/complicatedhttps://www.pathwaystotrust.org/initiativeshttps://www.thecut.com/2022/10/child-abuse-munchausen-syndrome-by-proxy.htmlWhen 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.LinksBend or Break documentary https://youtu.be/5toRNvFug3YInstagram (@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.comInstagram: @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.auhttps://www.instagram.com/hypermobility.dietitian/?hl=en
On this episode, Dr. Alysse Cruz, who goes by @zebracornmd on Instagram, discusses the diagnostic process for Hypermobility and more. Dr. Cruz is a multiracial, first generation, board-certified family medicine doctor with myopathic Ehlers-Danlos Syndrome (EDS) and POTS and a passion for teaching. She obtained her degree from The Ohio State University and completed her residency training at the University of Minnesota Medical Center - Smiley’s Clinic. Dr. Cruz now works at Allina Health in Blaine, Minnesota and she has developed specialized knowledge and expertise in diagnosing and treating various types of EDS including hypermobile Ehlers-Danlos Syndrome. Links:https://www.instagram.com/zebracornmd/https://account.allinahealth.org/providers/19405
On this episode, Camille Schrier returns to talk about her life as a pharmacy student and her continuing advocacy efforts regarding Ehlers-Danlos Syndrome. Camille graduated with honors from Virginia Tech in 2018 with dual Bachelor of Science degrees in Biochemistry and Systems Biology. She is currently pursuing a Doctor of Pharmacy degree at Virginia Commonwealth University. In 2019 Camille earned the title Miss Virginia after performing a science experiment (the catalytic decomposition of hydrogen peroxide) as her onstage talent. In December 2019, Camille was named Miss America 2020, again after showcasing her science skills. Camille also provides STEM outreach via Her Royal Scientist.Links:https://www.camilleschrier.com
On this episode, Kerry interviews Dr. Melissa Koehl, a physical therapist diagnosed with hypermobile Ehlers-Danlos Syndrome. Dr. Melissa was a competitive level 10 gymnast in her earlier years and ended up incurring a number of injuries including a career-ending stress fracture to her lower back. Dr. Melissa created her own ChimeraFit method that combines elements of Pilates, Yoga, strength, and balance work. She has been teaching her method to others with hypermobility, arthritis, and joint pain for over 20 years. She also has a great instagram page with lots of content about different movement approaches for people at many places on the hypermobility spectrum.Links:https://www.instagram.com/dr.melissakoehl.pt/https://www.chimera-health.com/https://www.chimera-health.com/hypermobile-fitness-course
Content notice: This episode contains discussion of premature death and descriptions of physical symptoms and medical procedures/conditionsThis podcast is for informational and educational purposes only. Please consult with appropriate medical professionals before making any changes to your own health regimen.On this episode, researchers Fiona Sullivan and Danielle Humphreys (who have both been diagnosed with hEDS) discuss their research into the causes and mechanisms underlying hypermobility and other health conditions and what they’ve found regarding the role of zinc in human health.Instagram:@fiona_my_eds (Fiona)@edsexpertpatient (Danielle)
On this episode, Kerry interviews Doug Kremer, a mechanical engineer diagnosed with hEDS in late 2021. He’s the father of two girls, one who is 17 and has mild features of hypermobility and another daughter who is 19 and was diagnosed with hEDS in mid-2021. Doug reached out after finding success with one of the treatments we discussed on this show and he and I have become friends chatting about hypermobility and many other shared interests. Doug has found some great hypermobility hacks that have helped him to improve his life and it’s great to hear a hypermobility success story and to have an important reminder that hEDS definitely does impact men as well and that the condition can be diagnosed at virtually any age.
Content Warning: This episode contains mentions of suicidality, ableism, abuse, exploitation, medical trauma, white supremacy, eugenics. Please exercise listener discretion.On this episode, Kerry interviews L Tuthall (they, them) and Audre Wirtanen (she, her)--two disabled community organizers, care access advocates, artists, and researchers who co-founded and co-direct Hyp-ACCESS. Hyp-ACCESS is a Hypermobile-specific disability justice organization working to increase care access and justice for Hyps (a term they coined) in the arts, medicine, and alternative therapy spaces.L and Audre met in a somatic training that was not accessible to them and so they developed Hypermobile Accessible Proprioceptive Therapy (or HAPT) by combining sensorimotor theory with the values of disability justice. L and Audre develop and operate multi-field care access programs and are accessibility consultants for dance organizations and policy groups. They also run IRB approved research and collaborate with scientists at WUStL and Keene State.Links:https://www.hyp-access.com/https://www.instagram.com/hyp_access/https://www.instagram.com/audrewirtanen/https://www.instagram.com/ltuthall/
Victoria was a professional dancer and Gyrotonic Instructor who has performed throughout the US and worldwide including in Israel, Greece, and a tour in Austria. After being diagnosed with hypermobile Ehlers-Danlos Syndrome, Victoria switched gears and is now a Postbac student at Columbia University in New York City where she is pre-med and preparing for a career as a physician.Links:https://www.victoriadaylor.com/https://www.instagram.com/victoria.daylor/
On today’s episode, Savita Sandhu from Savvy Dietetics located in Brisbane, Australia discusses the relationship between hypermobility and our diets. 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.https://www.instagram.com/hypermobility.dietitianhttps://www.savvydietetics.com.au/
This episode is Part 3 in a series of interviews with Dr. Pradeep Chopra. This episode focuses on the types of headaches experienced by people with EDS and hypermobility and how those headaches can be diagnosed and treated.Dr. Chopra completed an anesthesia residency at Harvard Medical School and went on to complete a fellowship in Pain Management, also from Harvard. Dr. Chopra is double board certified in Pain Management and Anesthesiology by the American Board of Anesthesiology. Currently, Dr. Chopra holds the appointment of Assistant Professor (Clinical) at the Department of Medicine at Brown Medical School as well as an adjunct Professorship of Anesthesiology at Boston University School of Medicine. Dr. Chopra has won a number of awards commemorating his achievements and his approach to treating his patients. He is also the author of several publications on chronic pain including book chapters and academic articles. He has a special interest in managing complex pain conditions including complex regional pain syndrome (CRPS) and the Ehlers-Danlos Syndromes. Dr. Chopra also frequently gives presentations to raise awareness about EDS and specifically about pain issues in the community. Links:https://painri.com/pradeep-chopra-md/
On this episode, our guest is a practitioner who has treated patients with Ehlers-Danlos syndrome for decades. Dr. Kevin Lasko is a board-certified Chiropractor with extensive neurological background experience who owns and operates his own practice called Hemispheres in Quarryville, Pennsylvania. Dr. Lasko’s practice treats many of the signs and symptoms of hypermobility conditions including Ehlers-Danlos syndrome. His treatments have addressed issues like high heart rate (tachycardia), increased sweating, gastroparesis, sleep difficulties, issues with swallowing, and issues associated with mast cell activation and brain fog. He also treats movement disorders including dystonia, tremors, and twitches. Dr. Lasko also has significant experience in working with POTS (postural orthostatic tachycardia syndrome) including symptoms like changes in heart-rate, blood pressure issues, dizziness, and loss of balance. He is also highly experienced in dealing with cervical spine instability which is a major issue for many patients with hypermobility conditions, myself included, and his practice uses a digital motion x-ray (DMX) to evaluate cervical spine dysfunction including craniocervical instability and atlantoaxial instability. Dr. Lasko’s appointments involve individualized care with multi-hour appointments to evaluate his patients in their entirety. He also provides 3-5 day treatment plans (or longer), as well as individualized at-home programs.
On this episode, Kerry interviews Dr. Angelina Vera, a fellowship trained orthopedic surgeon who specializes in sports medicine, arthroscopy, and the treatment of injuries to the shoulder, hip, knee, and ankle. Her practice is located in the Las Vegas, Summerlin, and Henderson areas of Nevada. She has a particular interest in hip pathology, anatomic variances, and genetics as they relate to dancers and she has a focus on the prevention and management of sports and dance related injuries. Dr. Vera has conducted some very interesting research which she has presented at multiple national and international conferences. She is also the author of several peer reviewed publications.Links:https://www.angelinaveramd.com/https://www.angelinaveramd.com/pdfs/vera-high-prevalence-connective-tissue-gene-variants-professional-ballet.pdf
On this episode, John Ferman returns to talk about his recent work with his organization EDS Awareness/Chronic Pain Partners. EDS Awareness/Chronic Pain Partners has tons of great content including free online webinars that are posted to YouTube (one of which has an astounding 50,000 views) so definitely check them out if you haven’t already and are looking to learn more about Ehlers-Danlos and chronic pain. One of the recent topics John has been working on is raising awareness about how EDS is not “all in your head.”
Links: EDS Awareness site - https://www.chronicpainpartners.com/
EDS is not all in your head article - https://www.chronicpainpartners.com/eds-is-not-all-in-the-head/
Healthcare Providers CME Programs - https://ehlers-danlos-cme.org/
EDS Leadership Program - http://www.leadeds.com/
EDS Awareness Newsletters - https://www.chronicpainpartners.com/eds-awareness-educational-programs-and-newsletter/
Christie Cox is a patient advocate who was diagnosed with hypermobile Ehlers-Danlos Syndrome after a 17 year quest to find answers. Christie just published a fascinating book called Holding it All Together When You’re Hypermobile: Achieving a Better Life Experience with EDS, POTS, & Joint Instability and she has a patient advocacy practice that offers free initial consultations and other great content on her website.
Christie’s book explores the basics of hypermobile EDS, its common comorbidities, tips on getting diagnosed, coping strategies, lifestyle changes, and tons of other resources on how to get help. Check out her website for more free resources for EDS patients. The book also delves into the future of scientific medical research, in search of tools for earlier diagnosis and treatment, and how to foster a positive mindset in the face of despair.
Links:
Holding it All Together Book: https://www.holdingitalltogether.com/
Christie Cox’s Patient Advocacy: https://www.journey2joyous.com
Scheduling A Free Initial Consultation: https://calendly.com/journey2joyous/15min
Part 2 in our series of interviews with Dr. Pradeep Chopra, renowned specialist in treating pain and the various co-morbidities and symptoms that occur in people with Ehlers-Danlos Syndrome and other conditions involving chronic pain. This episode centers on mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS).
www.painri.com
On this episode, Kerry interviews Hannah Ensor regarding her work with the Hypermobility Syndromes Association (the HMSA) and Stickman Communications. Hannah is based in the United Kingdom and she worked in the field of Environmental Health for five years before being medically retired at age 28 due to a hypermobility spectrum disorder and postural orthostatic tachycardia syndrome (POTS). Even though Hannah had symptoms of hypermobility throughout her life, she wasn’t diagnosed until she discovered the HMSA and it was the information and support that she received from the HMSA that led her to the right diagnosis and to a course of treatment to manage her conditions.
Hannah also created Stickman Communications, a company that uses cartoon drawings of stickmen to break down the barriers to communicating positively yet realistically about a wide range of disabilities, needs, and symptoms. Her products, blogs, and talks are used worldwide by people with disabilities and medical professionals.
Hannah has volunteered for the Hypermobility Syndromes Association since 2010 and was featured in the ‘Power 100’ list of Britain’s most influential people with a disability or impairment in 2016 and 2017. Hannah is now an ex-trustee of the HMSA after stepping down in December 2021 although she continues to volunteer in other roles.
Links: HMSA: https://www.hypermobility.org/ Stickman Communications: https://stickmancommunications.co.uk/
Trigger Warning: This episode contains discussion of suicidal thoughts and suicide. Please exercise listener discretion and if this episode isn't for you for any reason or if you are listening with children, please skip it, we've got some great new episodes coming out soon. If you are struggling with suicidal thoughts, please seek assistance. You are worthy and deserving of help and help is out there even though it is often very difficult to find. Feel free to email hypermobilityhappyhour@gmail.com and we can help you to find a patient advocate (or just chat or help you to find a support group or other resources) but this email is not actively monitored and is not for emergency situations.
On this episode, our guest is is a fascinating patient advocate who recently participated in a documentary called Bend or Break which documents his patient experience with Ehlers-Danlos Syndrome. Mitch Martow started his blog Bend or Break on 2010 to document his struggle with the condition and filmmakers used his blog to write and produce a documentary about Mitch’s experience which was recently released and is available to watch for free on YouTube. This episode was recorded before the episode was released.
Links: (Trigger Warning: these links contain discussion of suicide and other challenging topics, please exercise viewer/reader discretion):
Bend or Break Documentary on YouTube: https://www.youtube.com/watch?v=5toRNvFug3Y Mitch's TedX Talk: https://www.youtube.com/watch?v=OMCPfVCAIM8 Mitch's YouTube page: https://www.youtube.com/channel/UCodj1ddsIFPN90-jyExje8w POV Magazine article: https://povmagazine.com/bend-or-break/ Mitch's Bend or Break Blog: http://breakorbend.blogspot.com/ Instagram: https://www.instagram.com/_bend_or_break_/ Instagram: https://www.instagram.com/mitchmartow/?hl=en Facebook: https://www.facebook.com/mitch.martow
On this episode, Dr. Jeffrey Boris, a board-certified pediatric cardiologist and general pediatrician talks about his experience caring for patients with POTS since 2002. He has worked with patients who have multiple other diagnoses alongside their POTS, including joint hypermobility with or without Ehlers-Danlos syndrome, concussions, mast cell activation syndrome, Sjögren syndrome, eosinophilic esophagitis, median arcuate ligament syndrome, and other conditions.
Dr. Boris advocates a creative, multi-pronged approach to helping children get back to school, sports, and their lives. He has published research in acclaimed medical journals to help doctors better understand POTS so more physicians will be available to treat it and join research efforts to better understand this disorder.
In 2016, Dr. Boris was named “Physician of the Year” by Dysautonomia International, a leading organization seeking to improve the lives of people with autonomic nervous system disorders. He was recognized for his warmth, compassion and tireless commitment to his pediatric and young adult patients.
Links: https://www.jeffreyborismd.com/ https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf
On this episode (part 1 in a series), Kerry interviews Dr. Pradeep Chopra who gives an overview regarding treatment of Ehlers-Danlos Syndromes and pain. Dr. Chopra completed an anesthesia residency at Harvard Medical School and went on to complete a fellowship in Pain Management, also from Harvard. Dr. Chopra is double board certified in Pain Management and Anesthesiology by the American Board of Anesthesiology. Currently, Dr. Chopra holds the appointment of Assistant Professor (Clinical) at the Department of Medicine at Brown Medical School as well as an adjunct Professorship of Anesthesiology at Boston University School of Medicine. Dr. Chopra has won a number of awards commemorating his achievements and his approach to treating his patients. Dr. Chopra is also the author of several publications on chronic pain including book chapters and academic articles. He has a special interest in managing complex pain conditions including complex regional pain syndrome (CRPS) and the Ehlers-Danlos Syndromes. Dr. Chopra also frequently gives presentations to raise awareness about EDS and specifically about pain issues in the community.
Links: https://painri.com/pradeep-chopra-md/ Pain Management in the Ehlers-Danlos Syndromes, Chopra et al.: https://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.c.31554
On this episode, Kerry interviews Isobel Knight, a writer, researcher and lecturer on hypermobile Ehlers Danlos Syndrome. She was also a practitioner of the Bowen technique--a gentle form of soft tissue therapy from Australia for 17 years. Isobel unfortunately medically retired in 2017.. Isobel is the author of 'A Multidisciplinary Approach to Managing Ehlers-Danlos (Type III) - Hypermobility Syndrome' and she co-wrote, with John Wilks, 'Using the Bowen Technique to Address Complex and Common Conditions.’
Isobel first published the book, 'Hypermobility Syndrome - bending without breaking' that became so successful it was changed into a second edition in 2016, and contains 5 new chapters. Isobel also had a narrative medicine and EDS article published in the prestigious American Journal of Genetics in 2015. Isobel also worked with Dr. Carol Clark at the University of Bournemouth on research into a humanistic framework for managing EDS which culminated in a paper published in December 2017 in the Journal of Qualitative Studies of Health Well-Being. Isobel has been published in the British Medical Journal and has lectured extensively across the United Kingdom.
Links: https://onlinelibrary.wiley.com/doi/abs/10.1002/ajmg.c.31428 Twitter: https://twitter.com/isobelknight2 https://www.hachette.co.uk/titles/isobel-knight-2/a-multidisciplinary-approach-to-managing-ehlers-danlos-type-iii-hypermobility-syndrome/9781848190801/
In this episode, Emily Rich, OT discusses her practice as an occupational therapist working with patients with EDS, hypermobility conditions, and co-morbidities like POTS. Emily is a practicing occupational therapist, Ph.D. student, and researcher. Her interests lie in chronic conditions (including POTS, EDS, and related hypermobility conditions) and health care advocacy.
She discusses her approaches to treating EDS and POTS, common issues in patients with EDS (like hand pain), and her treatment strategy for these conditions. Emily also discusses her research efforts and her passion for learning and listening to patients to fine-tune her practice and tailor it to her individual patients.
https://www.otemily.com/ https://www.instagram.com/emilyrichot/?hl=en
On this episode, Libby Hinsley (physical therapist, yoga therapist, and long time yoga teacher diagnosed with hypermobile EDS) discusses her practice working with hypermobile patients and chronic pain conditions as well as her new book called Yoga for Bendy People: Optimizing the Benefits of Yoga for Hypermobility. The e-book will be released in May 2022, and the paperback will follow in June. Libby has been a physical therapist for over ten years and a yoga teacher for 18 years. Her book is the culmination of countless hours of research and interviews with healthcare professionals, yoga practitioners, and hypermobile patients.
Links: https://www.libbyhinsley.com https://www.instagram.com/libbyhinsleypt/?hl=en
On this episode, Kate Skinner PT discusses her physical therapy practice and her unique perspective as a patient with EDS. Kate has a Doctorate in Physical Therapy and she currently practices as a physical therapist who specializes in the treatment of chronic pain and hypermobility. She has a number of online resources available like her Hypermobility 101 book and programs designed to address hypermobility and issues like chronic neck pain. Kate also offers individual coaching sessions and operates a physical therapy practice in Montana. She offers her perspective on pain education in PT, working with hypermobile children, the state of research and much more.
https://www.kateskinnerpt.com/ Instagram https://www.instagram.com/hypermobility_solution/ Facebook Page https://web.facebook.com/HypermobilitySolution Facebook Group https://web.facebook.com/groups/kateskinnershypermobilitysupportgroup?_rdc=1&_rdr YouTube channel https://www.youtube.com/channel/UCmDiJJYPKwycCkE5LGIeeIQ
On this episode, Kerry interviews Lilian Holm (Doctor of Physical Therapy) about her practice which focuses on the treatment of patients with hypermobility conditions including Ehlers-Danlos Syndrome using physical therapy. Dr. Holm utilizes a comprehensive, unique model of care which includes extended private treatment sessions and shares her perspective on a variety of aspects of treating patients with EDS and related conditions including chronic pain and other orthopedic conditions.
On this episode, we have returning guest Dr. Abby McElroy who previously was a guest on the Hypermobility Happy Hour discussing EDS in animals. Today, she returns with her principal investigator Dr. Heather Gray-Edwards to discuss the exciting new research they have been working on.
Dr. Gray-Edwards is an assistant professor of Radiology at the University of Massachusetts’ Chan Medical School and is a member of the Horae Gene Therapy Center. Much of her research has been focused on evaluating therapeutic interventions in testing novel Adeno-associated viral vectors and delivery routes using both biochemical and molecular biology techniques, as well as in vitro evaluation like neurological examinations, MRIs, and electrodiagnostics of GM1 and GM2 gangliosidosis cats.
Dr. McElroy is a doctoral student who previously received her Doctor of Veterinary Medicine degree from Tufts University in 2017. She further obtained a master’s degree from Michigan State University in 2018 which focused on the characterization of neurological abnormalities in an equine model of Ehlers-Danlos syndrome. From 2018 to 2021, Dr. McElroy was a Postdoctoral Research Associate in the Department of Neurosurgery at Rhode Island Hospital and the Medical School of Brown University where she studied tethered cord syndrome and myodural bridge dysfunction in patients with Ehlers-Danlos Syndrome. In her current position at the Gray-Edwards laboratory at the University of Massachusetts’ Chan Medical School focuses on the development of gene therapy for Ehlers-Danlos syndromes and multisystemic smooth muscle dysfunction syndrome (related to the ACTA2 mutation). Abby also has two cats and two dogs and one of her cats has Ehlers-Danlos syndrome and is a bit of a social media star in his own right (his name is Reed and you can follow him at reed_eds)
On this episode, Dr. Megan Barker of Rhythm Health, LLC discusses her practice treating patients with EDS and HSD using physical therapy and health coaching. Dr. Barker has a Doctor of Physical Therapy degree from The George Washington University where she is a current member of the adjunct faculty at the university’s Doctor of Physical Therapy Program. Dr. Barker is a Board Certified Specialist in Orthopedic Physical Therapy. She is also a Certified Women’s Health Coach through the Integrative Women’s Health Institute. Dr. Barker also has Pilates Training.
Dr. Barker is particularly passionate about treating women with hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder (HSD). Throughout her practice, Dr. Barker has worked with many women who had previously been misunderstood or misdiagnosed and as a result suffered from poorly-managed care.
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/
On this episode of Hypermobility Happy Hour we have two very special guests--Dr. Russell Norris, head of the Norris Lab at the Medical University of South Carolina and Cortney Gensemer, a graduate student and PhD candidate in the Norris Lab. The Norris lab has made some very exciting discoveries relating to connective tissue disorders and hypermobility specifically and so we’re very excited to get an update about what they’re doing and what the future might hold in terms of diagnosis and even treatments for hypermobility conditions.
The Norris lab is a multidisciplinary laboratory with students and PhD graduates who use various molecular, biochemical and biomechanical tools to understand connective tissue conditions. Dr. Norris and his laboratory have spent over two decades working to understand the genetics of cardiovascular diseases including cardiomyopathies, mitral valve prolapse, aortic stenosis, and other aortic valve diseases. Recently, the Norris lab made a discovery of a very strong candidate gene for hypermobile Ehlers-Danlos Syndrome.
Norris Lab | College of Medicine | MUSC https://medicine.musc.edu/departments/regenerative-medicine/research/norris-lab
MUSC researchers announce gene mutation discovery associated with EDS | MUSC | Charleston, SC https://web.musc.edu/about/news-center/2021/07/14/musc-researchers-announce-gene-mutation-discovery-associated-with-eds-ehlers-danlos
On this episode of the Hypermobility Happy Hour, Kerry interviews Dr. Richard Barnum. Dr. Barnum is a board certified child and adolescent psychiatrist who directed the Boston Juvenile Court Clinic for more than twenty years. In that role, he conducted psychiatric evaluations of thousands of children and families in the Massachusetts courts and also provided consulting services to the Massachusetts Departments of Mental Health and Youth Services, regarding cases involving complex legal and clinical problems. He has also consulted with the United States Department of Justice Civil Rights Division regarding psychiatric care provided to incarcerated juveniles in other states. He was also formerly an Assisted Clinical Professor of Psychiatry at Harvard Medical School and was affiliated with the University of Massachusetts Medical School. Dr. Barnum also contributed a chapter to the book Disjointed.
Dr. Barnum discusses the appropriate treatment of patients with hEDS, the issues in getting proper diagnoses, and what to do when you’ve been misdiagnosed with a psychiatric condition and/or undertreated for their physical ailments and conditions.
Barnum, Richard, “Problems with diagnosing Conversion Disorder in response to variable and unusual symptoms.” Adolescent, health, medicine and therapeutics vol. 5 67-71. 17 Apr. 2014, doi: 10.2147/AHMT.S57486. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4000178/
Dr. Richard Barnum, Psychiatrist, discusses EDS & Psychiatric illness misdiagnoses, EDS Awareness Educational Series, 17 September 2014, https://chronicpainpartners.com/webinar/free-webinar-19/
Article on misdiagnosis mentioned by Dr. Barnum:
https://www.verywellhealth.com/how-to-correct-medical-record-errors-2615506
Camille Schrier was diagnosed with classical Ehlers-Danlos as a child and went on to win the title of Miss America. She graduated with honors from Virginia Tech in 2018 with dual Bachelor of Science degrees in Biochemistry and Systems Biology. Camille is currently pursuing a Doctor of Pharmacy degree at Virginia Commonwealth University. In 2019 Camille earned the title Miss Virginia after performing a science experiment (the catalytic decomposition of hydrogen peroxide) as her onstage talent. In December 2019, Camille was named Miss America 2020, again after showcasing her science skills.
Camille has also been featured on national and international media outlets including The Today Show, CNN, BBC, The Kelly Clarkson Show, CBS This Morning, Inside Edition, The Weather Channel, Southern Living, Canada’s CTV, Germany’s RTL, and many more. She also partnered with PBS to produce a web series called Cooking up Science with Miss America.
Camille Schrier website: https://www.camilleschrier.com/ YouTube clip of Miss Virginia science experiment: https://www.youtube.com/watch?v=fsYUYja7O4A Instagram: @CamilleSchrier
Questions? Comments? Suggestions for future episodes? Email hypermobilityhappyhour@gmail.com
On today's episode, Nia Clark and Kerry interview Dr. Abby McElroy, Doctor of Veterinary Medicine about EDS in many different animals. Dr. McElroy has an EDS-like syndrome herself and her work focuses on the research and treatment of animals with EDS. Dr. McElroy received her bachelor’s degree in neuroscience from Smith College, her DVM from the Cummings School of Veterinary Medicine at Tufts University, and her Master of Science degree from Michigan State University College of Veterinary Medicine.
Dr. McElroy currently works as a postdoctoral research associate in the Department of Neurosurgery at Rhode Island Hospital, where her research focuses on occult tethered cord any myodural bridge dysfunction in EDS. She also works part time as a small animal veterinarian, and consults worldwide on veterinary EDS cases.
The information discussed on this podcast episode relates to the treatment of animals and is educational only and not intended to be used in the treatment of any specific animal. This episode also includes off label discussion of treatments used in veterinary practice.
https://metro.co.uk/2020/01/15/cat-ehlers-danlos-syndrome-finds-loving-home-researcher-condition-12029489/
https://www.instagram.com/reed_eds/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6565730/
On this episode, Kerry talks to Esther Gokhale, founder of the Gokhale Method or “Primal Posture,” a postural awareness technique which has a large following and was first popularized at the beginning of the 2010s with professionals in Silicon Valley, California. Esther is known as the “posture guru of Silicon Valley” and her method has been taught internationally. She published a book called 8 Steps to a Pain-Free Back: Natural Posture Solutions for Pain in the Back, Neck, Shoulder, Hip, Knee, and Foot and she also created a DVD that explains her posture method. The Gokhale Method has been reported upon in the New York Times, by NPR, and many, many other publications. Esther also has a fantastic TED talk as well.
Follow the Gokhale Method on Facebook, Twitter on Instagram: @GokhaleMethod
Links:
https://www.youtube.com/watch?v=k1luKAS_Xcg (TedX talk)
https://www.amazon.com/Steps-Pain-Free-Back-Solutions-Shoulder/dp/0979303605/ref=sr_1_1?dchild=1&keywords=gokhale&qid=1591209952&sr=8-1 (Amazon listing for Esther's book)
https://www.amazon.com/Back-Pain-Primal-Posture-Solution/dp/B0072M7TMQ/ref=sr_1_1?dchild=1&keywords=gokhale+dvd&qid=1591209987&sr=8-1 (Amazon listing for Esther's DVD)
https://gokhalemethod.com/
On this episode of Hypermobility Happy Hour, Kerry and Nia talk about the coronavirus and how it relates to people with hypermobility disorders. We also speak with Dr. Eric Phillippi, physician and owner of Medical Procedures of Wisconsin, about the latest expert advice on coping with Covid-19.
On this episode of Hypermobility Happy Hour, Kerry interviews Karina Sturm, filmmaker and producer of the documentary We Are Visible which explores many of the challenges faced by people living with hypermobility conditions. Karina also discusses her own experiences with EDS and related conditions.
Dr. Brad Tinkle, one of the leading specialists in the treatment and diagnosis of hypermobility disorders, answers many of the key questions relating to hypermbility disorders: how rare (or common) is it? How do we treat it effectively? How do we increase awareness? How do we use social media responsibly? And so much more. It's a can't miss conversation that we hope you enjoy!
Dr. Tinkle is an MD, PhD clinical geneticist at Peyton Manning Children’s Hospital in Indianapolis, Indiana. Previously he has been the Medical Director of Clinical Genetics at Advocate Children’s Hospital in Chicagoland and was a clinical and clinical molecular geneticist as well as the associate director in the Clinical Molecular Genetics Laboratory at Cincinnati Children’s Hospital Medical Center (CCHMC). He specializes in caring for individuals with heritable connective tissue disorders such as Ehlers-Danlos syndromes, Marfan syndrome, osteogenesis imperfecta, and achondroplasia. He served as director of the Skeletal Dysplasia Center at Cincinnati Children’s Hospital, co-director of the Marfan/Ehlers-Danlos Syndrome Clinic, as well as director of the Connective Tissue Clinic.
Dr Tinkle earned a bachelor’s in science for engineering (BSE) in genetic engineering from Purdue University and he received his Ph.D. in Human Genetics from George Washington University in the District of Columbia. Dr. Tinkle attended medical school at Indiana University. His pediatric/clinical genetics residency and clinical molecular genetics fellowship were completed at Cinncinati Children’s Hospital.
Dr. Tinkle authored the “Joint Hypermobility Handbook: A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome” which Won an Award for Publication Excellence (APEX) in healthcare. Dr. Tinkle’s other published book is called Bendy Wendy and the (Almost) Invisible Genetic Syndrome: A story of one tween’s diagnosis of Ehlers-Danlos Syndrome / joint hypermobility. Both books can be found on Amazon. Dr Tinkle has also authored numerous peer reviewed medical journal articles and was a member of the International Consortium of Ehlers-Danlos Syndromes and related disorders.
Previously, Dr. Tinkle served on the Board of Directors and on the Professional Advisory Network of the Ehlers-Danlos National Foundation.
Dr. Brad Tinkle, one of the leading specialists in the treatment and diagnosis of hypermobility disorders, answers many of the key questions relating to hypermbility disorders: how rare (or common) is it? How do we treat it effectively? How do we increase awareness? How do we use social media responsibly? And so much more. It's a can't miss conversation that we hope you enjoy!
Dr. Tinkle is an MD, PhD clinical geneticist at Peyton Manning Children’s Hospital in Indianapolis, Indiana. Previously he has been the Medical Director of Clinical Genetics at Advocate Children’s Hospital in Chicagoland and was a clinical and clinical molecular geneticist as well as the associate director in the Clinical Molecular Genetics Laboratory at Cincinnati Children’s Hospital Medical Center (CCHMC). He specializes in caring for individuals with heritable connective tissue disorders such as Ehlers-Danlos syndromes, Marfan syndrome, osteogenesis imperfecta, and achondroplasia. He served as director of the Skeletal Dysplasia Center at Cincinnati Children’s Hospital, co-director of the Marfan/Ehlers-Danlos Syndrome Clinic, as well as director of the Connective Tissue Clinic.
Dr Tinkle earned a bachelor’s in science for engineering (BSE) in genetic engineering from Purdue University and he received his Ph.D. in Human Genetics from George Washington University in the District of Columbia. Dr. Tinkle attended medical school at Indiana University. His pediatric/clinical genetics residency and clinical molecular genetics fellowship were completed at Cinncinati Children’s Hospital.
Dr. Tinkle authored the “Joint Hypermobility Handbook: A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome” which Won an Award for Publication Excellence (APEX) in healthcare. Dr. Tinkle’s other published book is called Bendy Wendy and the (Almost) Invisible Genetic Syndrome: A story of one tween’s diagnosis of Ehlers-Danlos Syndrome / joint hypermobility. Both books can be found on Amazon. Dr Tinkle has also authored numerous peer reviewed medical journal articles and was a member of the International Consortium of Ehlers-Danlos Syndromes and related disorders.
Previously, Dr. Tinkle served on the Board of Directors and on the Professional Advisory Network of the Ehlers-Danlos National Foundation.
Dr. Paldeep Atwal shares with Dr. Bluestein how he turned a VUS (variant of unknown significance) into a known genetic marker for EDS. Also discussed the role of epigenetics, the EDS phenotype and EDS prevalence.
Wisconsin State Rep. Jimmy Anderson (D-Fitchburg) talks to Dr. Bluestein and Kerry about his efforts to secure disability accommodations and about finding purpose after tragedy.
On this episode, Dr. Bluestein discusses the recent ranitidine recalls and the important facts that patients taking this medicine should know.
Dr. Bluestein and Kerry talk to Dr. Liberty Boucher, DDS about issues with the teeth, mouth, and jaw that are common in patients with EDS. Dr. Boucher gives some tips on how to improve the overall health of the mouth.
Dr. Bluestein interviews Dr. Francomono about her new clinical practice in Indianapolis, her research activities, and her work with the EDS Society.
On this episode, Jeannie DiBon discusses the importance of the breath and takes us through a quick breathing exercise that we can all do at home to bring a bit more ease and calm into our lives. Jeannie is a movement therapist who specializes in working with patients who have Hypermobile Ehlers-Danlos Syndrome and Chronic Pain.
If you have any questions or suggestions for future episode topics, feel free to email us at hypermobilityhappyhour@gmail.com.
Dr Bluestein interviews Valerie, a contortionist and performer with Cirque de Soleil, at the 2019 International Association for Dance Medicine & Science (IADMS) Annual Conference in Montreal, Quebec, Canada.
On this episode of the Hypermobility Happy Hour, Dr. Bluestein and Kerry interview Ambassador Melissa Wells--a career diplomat who served as an ambassador to 5 different countries. Ambassador Wells was diagnosed as "double-jointed" long before the HSD and EDS guidelines were established and she shares her perspective as a patient with features of hypermobility and as someone who has a lifetime of experience with diplomacy. She even provides tips for how we can all be more diplomatic in our everyday lives.
We hope you enjoy this special episode of the Hypermobility Happy Hour, the first in our Patient Stories series.
Ways to be your most delicious self.
Dr. Bluestein chats with Jennifer Varga, Registered Dietitian. Jennifer provides useful tips for feeling better and building stronger connective tissue by making changes to your diet.
Dr. Bluestein chats with Maggie Buckley, Advocacy Advisor, who has coached hundreds of people to self-advocate for better care and testifies at state and federal policy hearings, spoken at conferences and in the media. Maggie shares great tips that will help anyone get better quality healthcare.
Dr. Bluestein and Kerry interview Lila Rosenthal, MD, specialist in Mast Cell Activation Syndrome and related disorders. Dr. Rosenthal discusses options for painful menstrual periods, pelvic pain and more.
Interview with Dr. Antonio Bulbena, who recommends that everyone have someone with EDS in their life and discusses the talented side of hypermobility disorders. Dr. Bulbena, the psychiatrist who in 1988 originally observed and described the strong link between several anxiety disorders and joint laxity, talks about his extensive research and dives deep into some fascinating topics including the link between joint laxity and chocolate and carbohydrate consumption. The “Neuroconnective phenotype” is also covered.
On this episode, Dr. Bluestein and Kerry talk to Dr. John Mitakides about jaw issues that can arise in patients with hypermobility disorders including TMJ (temporomandibular joint) dysfunction.
Dr. Mitakides is a Diplomate of the American Academy of Craniofacial Pain, one of only 115 practitioners in North America to earn that recognition. He is a Diplomate of the American Board of Craniofacial Dental Sleep Medicine, and a member of the Professional Advisory Network of the Ehlers-Danlos National Foundation, the leading organization serving EDS patients and physicians. In addition, he is the only dental professional serving as consultant to the new Ehlers-Danlos National Foundation Center for Clinical Care and Research in Baltimore.
On this episode, Dr. Bluestein chats with Jyothi Rao, MD, author of "Finding Balance: Empower Yourself with Tools to Combat Stress and Illness". Dr. Rao is Board Certified in Anti-Aging Medicine and Internal Medicine and talks about how she addresses and treats hypermobility disorders and related conditions like Mast Cell Activation Syndrome.
On this episode Dr. Bluestein and Kerry chat with Dr. Stephen Brewer, Medical Director, Canyon Ranch Health Resorts. Dr. Brewer is author of several books including "What Happened to Moderation: A Common-Sense Approach to Improving Our Health and Treating Common Illnesses in an Age of Extreme" being released in September 2019, “The Canyon Ranch Guide to Men’s Health", and he coauthored “The Everest Principle - How to Achieve the Summit of Your Life".
On this episode of the Hypermobility Happy Hour, Kerry and Dr. Bluestein talk with disability and patient advocacy expert Jon Rodis. In this interview, Jon gives tips for working on disability evaluations, getting more from your doctor appointments, coping with connective tissue disorder symptoms and more.
On this episode, Dr. Bluestein and Kerry interview John Ferman who, along with his daughter, Deanna Hamm, founded EDS Awareness (aka Chronic Pain Partners) in 2012. EDS Awareness develops programs to connect, support, and educate those with Ehlers-Danlos Syndrome, their caregivers and the medical community. John has a very personal connection to EDS that inspired him to help start or support over 120 local EDS support groups world wide. EDS Awareness has also directed more than 90 free monthly patient-oriented EDS Educational webinars and he created the first online EDS Nursing CEU and Physician CME Educational Program.
On this episode, Dr. Bluestein and Kerry interview Dr. Tania Dempsey, an expert in mast cell activation syndrome, chronic diseases, and autoimmune disorders. Dr. Dempsey discusses the relationship between mast cells and hormones and different treatment approaches for these complex conditions. Dr. Dempsey's practice is focused on the root cause of illness and her purpose is to understand why patients get sick and to help them to understand their body and why it fails them when it does.
On this week’s episode of the Hypermobility Happy Hour (the first podcast dedicated to discussing hypermobility disorders including Hypermobile Ehlers-Danlos Syndrome), Dr. Bluestein and Kerry talk about mast cell activation disorders with Dr. Lawrence Afrin, a leading physician in the research, treatment, and diagnosis of mast cell activation disorders. Dr. Afrin received his medical degree from the Medical University of South Carolina in 1988 where he pursued a residency in internal medicine as well as clinical and research fellowships in hematology and oncology. While he was a member of the faculty at the Medical University of South Carolina from 1995 until 2014, Dr. Afrin was active in both undergraduate and graduate medical education and his practice and research focused on hematology and oncology--key areas for anyone interested in mast cells. In 2014, Dr. Afrin joined the University of Minnesota to further his study and interest in mast cell activation disorders and related issues.
Dr. Afrin also has an extensive record of peer-reviewed publications and is an internationally highly sought after speaker on the topics of mast cell activation syndrome and his other areas of expertise. In 2016, Dr. Afrin published Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity.
On this episode, Dr. Bluestein and Kerry talk to Jeannie DiBon, a movement therapist who specializes in Hypermobile Ehlers-Danlos Syndrome and other chronic pain disorders. Jeannie has more than a decade of experience in working with and supporting patients with their pain management and guidance on the path to improved health and overall wellbeing. Jeannie’s practice includes movement for pain management purposes, post-surgery therapy and injury rehabilitation and other targeted movement therapies that work with an individual’s current level of strength, balance and proficiency. Jeannie writes articles about chronic illnesses and invisible disabilities for several publications including the Huffington Post, The Mighty, and Thrive Global. She also regularly presents at international conferences for the Ehlers-Danlos Society.
Jeannie is also the author of Pilates Without Tears - The 5-Step, No Pain, No Strain Strategy to Move and Feel Great (published in 2016) and the very recently published (and fantastic) Hypermobility Without Tears: Moving Pain-Free with Hypermobility and EDS which was just released in June 2019.
Dr. Bluestein chats with Lara Bloom, International Director of the Ehlers-Danlos Society, about her personal medical journey as well as her advocacy work.
On this episode, Dr. Bluestein and Kerry discuss how rising temperatures can impact symptoms of hypermobility disorders including Hypermobile Ehlers-Danlos Syndrome. Dr. Bluestein explains how the heat can lead to pain flares, increased symptoms of dysautonomia (including POTS), and even lead to mast cell activation issues (and what you can do to beat the summer heat)
Dr. Bluestein and Kerry discuss various causes and influences of hypermobility including genetic factors, environmental factors, and how our lifestyle can impact our degree of hypermobility.
In this episode, Dr. Bluestein and Kerry discuss some of the paradoxes of having EDS including:
How many of us are told we “look good” while we feel not-so-great (and the issues that can arise out of that phenomenon)
How EDS seems to not exist at all outside of the EDS community but inside the community, it often seems like almost everybody has the condition
Why so many of us have similar stories (delayed diagnosis, extreme pain, etc.) and yet we end up feeling so alone and isolated (and what we can do about it)
In this special bonus episode of the Hypermobility Happy Hour Kerry and Dr. Bluestein discuss the purpose of the podcast, why it's called the Hypermobility Happy Hour, and the direction of future episodes.
Dr. Bluestein and Kerry discuss some of the key questions about having hypermobility disorders, such as:
Who do you need on your team? What are the most common mistakes people make? When will things improve? Where can you get the best care? Why is it so hard to get proper care? and How do you get the best care?
Dr Bluestein and Kerry discuss the process for diagnosing hypermobility disorders including Hypermobile Ehlers-Danlos Syndrome, and challenges and issues that can arise during that process.
On this episode, Dr. Bluestein and Kerry talk about common features, manifestations, and symptoms of hypermobility disorders and what patients with hypermobility disorders may look like (spoiler alert: there’s a lot of variation :).
Discussing low-dose naltrexone, a new treatment option for many issues related to hypermobility disorders including pain, immune issues, and central nervous system sensitization.
This episode was recorded at the Meagan's Walk 2019 event in Wausau, WI, on May 4, 2019.
What is Hypermobility?
Hosts Dr. Linda Bluestein and attorney Kerry Gabrielson discuss all things related to hypermobility disorders, including Hypermobile Ehlers-Danlos Syndrome.