Podcasts about ehlers danlos

In this episode, Dr. Valentin Fuster discusses a landmark study from the Montalcino Aortic Consortium revealing how genetic differences in Marfan syndrome, Loeys-Dietz syndrome, and vascular Ehlers-Danlos syndrome distinctly influence the risk and location of arterial events. The findings highlight gene-specific patterns—thoracic aortic complications in Marfan and Loeys-Dietz, and peripheral arterial issues in Loeys-Dietz and Ehlers-Danlos—paving the way for personalized surveillance and management strategies.

In this JACC podcast, Dr. Valentin Fuster presents five key studies, including new insights into arterial aneurysms in genetic aortopathies like Loeys-Dietz, Ehlers-Danlos, and Marfan syndromes, the implications of post-exercise troponin elevations in athletes, and 35-year outcomes of staged surgery for hypoplastic left heart syndrome. The episode also features a state-of-the-art review on heart failure with improved ejection fraction, highlighting emerging challenges and clinical strategies in this evolving phenotype.

Welcome to Dr. M's Women and Children First, where we dive into the latest insights on health and wellness for women and children. Today, we're honored to have Dr. Peter Rowe, a world-renowned expert from Johns Hopkins University, joining us to unravel the complexities of chronic fatigue.  Dr. Peter Rowe is a Professor of Pediatrics at the Johns Hopkins University School of Medicine. He is the inaugural Sunshine Natural Wellbeing Foundation Professor of Chronic Fatigue and Related Disorders and serves as the Director of the Chronic Fatigue Clinic at Johns Hopkins Children's Center. His areas of clinical expertise include chronic fatigue syndrome and other disorders characterized by fatigue and orthostatic intolerance. Dr. Rowe and his colleagues were the first to describe the relationship between chronic fatigue syndrome (CFS) and treatable orthostatic intolerance syndromes, as well as the association between Ehlers-Danlos syndrome and CFS. In this episode, Dr. Rowe and I dive deep into CFS and long Covid for both the parent and the clinician. We set the stage for a better understanding of this complex disorder in order to encourage earlier diagnosis and better therapy. From its impact on daily life to cutting-edge approaches for management, Dr. Rowe brings decades of expertise to help us understand this challenging condition.  Please Enjoy, Dr. M  

In this episode of the On the Runs podcast, hosts Eric and Erika welcome Ellen Hunter Gans (12:32), a passionate runner who shares her experiences with the Boston Marathon and her journey through various races. Ellen discusses the importance of community support, the challenges she has faced, and her aspirations for the future. With humor and insight, she reflects on her running journey, emphasizing the mental resilience required to overcome obstacles and the joy of celebrating small victories along the way. In this engaging conversation, the speakers explore the profound connections formed through running, particularly in the context of ultra marathons and the 777 challenge. They share personal experiences from races in Antarctica, Cape Town, and Australia, highlighting the beauty and challenges of each location. The importance of community, humor, and mental toughness in endurance sports is emphasized, along with the significance of writing about these experiences as a form of personal expression. From dealing with a painful spider bite during a race to the cultural insights gained from running in Istanbul, Ellen's stories are filled with humor and resilience. She discusses her journey with Ehlers-Danlos syndrome, the impact it has on her life and running, and her reflections on completing an Ironman. The conversation highlights the importance of community, humor, and the drive to push through challenges in pursuit of personal goals.Thank you to our supporters and new partnerships with My Race Tatts and Wright Socks. Check them out in the links below!Chapters00:00 Introduction and Catching Up12:32 Guest Introduction: Ellen Ganz01:51:58 Listener Engagement and Community Updates01:54:48 Discussion on 'The Pitt' Series02:02:14 Wrap-Up and Final Thoughts02:04:09 BlooperMy Race Tatts Affiliate Page - 15% of your purchase goes towards our TEAM FORCE Fundraising efforts for the NYC Marathon Wrightsock Affiliate Page - 15% of your purchase goes towards our TEAM FORCE Fundraising efforts for the NYC Marathon Eric's NYC Marathon Fundraiser - Team FORCE, a dynamic organization that supports the hereditary cancer community Erika's Chicago Marathon Fundraiser - for American Foundation for Suicide Prevention in memory of her brother, Nick Strava GroupLinktree - Find everything hereInstagram - Follow us on the gram YouTube - Subscribe to our channel Patreon - Support usThreadsEmail us at OnTheRunsPod@gmail.com

In the ninth of our 'Reflection Series', host Matt Phillips is joined by clinical massage therapist Jessica Janneman of Ease Therapies, who reflects on Ep.222 'A Therapist's Guide To Hypermobility ‘ that was recorded in December 2024 last year with special guest Bonnie Southgate. Jessica shares her personal journey and that of her daughter, with hypermobility and Ehlers-Danlos syndromes (EDS). She discusses the challenges it has brought, and how her own experience has informed her clinical massage practice. The episode emphasizes the lack of information out there regarding heritable connective tissue disorders, and the continued misdiagnosis that, in the case of Jessica, caused fourty years to pass before she it was finally recognised.  Jessica explains the crucial role of massage therapists in understanding and supporting clients with connective tissue disorders, and their potential to truly empower and transform lives. Chapter Markers 00:00:00 - Welcome to The Sports Therapy Association Podcast 00:03:56 - Introducing guest cinician Jessica Yanneman 00:05:45 - Reflecting on Episode 222 with Bonnie Southgate 00:08:46 - Jessica's Journey with Hypermobility & Ehlers-Danlos syndrome (EDS) 00:13:18 - Importance of Massage Therapy for patients with Connective Tissue Disorders 00:20:14 - Understanding Ehlers-Danlos syndrome (EDS) and Symptoms 00:26:53 - The Role of Therapists in Ehlers-Danlos syndrome (EDS) 00:33:33 - Client Relationships and Communication 00:43:51 - Challenges and Strategies for Therapists 00:45:04 - Closing Thoughts and Resources for Hypermobility & Ehlers-Danlos syndrome (EDS) 00:49:17 - Next Episode Preview Useful Links Ep.222 'A Therapist's Guide To Hypermobility' with special guest Bonnie Southgate Ep.41 'Understanding Hypermobility' with special guest Bonnie Southgate SEDS Connective Website SEDS Connective on Instagram Dr Jessica Eccles on Instagram Jessica Yanneman Website Jessica Yanneman on Instagram The Hands On Hub & STA Conference The STA South West Conference is taking place on September 20th & 21st in Exmouth, in collaboration with The ST School's Hands On Hub. Tickets are now on sale at The ST School Website.   This will be a brand new style of CPD Conference, designed to kickstart the future of Healthcare Education. There's a full day of presentations, workshops and practical sessions on the Saturday, a social buffet on the Saturday night, then a half day on Sunday including opportunities to reflect in groups on what you have learnt, plan together how the content will actually you're your practice evolve.  There's an Early Bird ticket til the end of June AND a discount code for STA members which can be found on the STA Members page.  Would YOU like to be a 'Reflection' guest on the podcast? If you would like to come on the show to chat about a past episode of the podcast, contact host Matt Phillips on social media, or email matt@thesta.co.uk. You will l need a pc or laptop (not your phone), with a quality internet connection (ethernet cable plugged directly into modem is best), and obviously webcam and mic.  Questions? Email: matt@thesta.co.uk

A deadly double/A possession that ruined a life Fan Art by Cretin Cave Productions https://www.youtube.com/watch?v=2L0aE1yXH7U   Patreon (Get ad-free episodes, Patreon Discord Access, and more!) https://www.patreon.com/user?u=18482113 PayPal Donation Link https://tinyurl.com/mrxe36ph MERCH STORE!!! https://tinyurl.com/y8zam4o2 Amazon Wish List https://www.amazon.com/hz/wishlist/ls/28CIOGSFRUXAD?ref_=wl_share   Links: Redditors who have worked around death/burial, what's your best ghost story? : r/AskReddit (Doopleganger Death Double Death Body Bag Suicide Look A Like story) https://www.reddit.com/r/AskReddit/comments/10o8hqn/comment/j6edndv/ what's the scariest thing you've ever experienced that you still can't explain? (UK Possessed By Castle Worker story) https://www.reddit.com/r/Paranormal/comments/1ier0uf/comment/maco1n2/ Trying to find a job while applying for disability benefits-US https://www.reddit.com/r/disability/comments/1ka1sdp/trying_to_find_a_job_while_applying_for/ What is EDS? https://www.ehlers-danlos.com/ Ehlers-Danlos syndrome https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125 u/Ok-Recognition1752 https://www.reddit.com/user/Ok-Recognition1752/submitted/ Archive https://archive.ph/tmzrs   ------------------------------------------------ Logo Art By Ash Black Opening Song: "Atlantis Attacks" Closing Song: "Bella Royale" Music By Simple Rabbitron 3000 created by Eerbud Thanks to Chris K, Founder Of The Golden Rabbit Brigade Dead Rabbit Archivist Some Weirdo On Twitter AKA Jack Youtube Champ: Stewart Meatball Reddit Champ: The Last747 The Haunted Mic Arm provided by Chyme Chili Forever Fluffle: Cantillions, Samson, Gregory Gilbertson, Jenny The Cat Discord Mods: Mason http://www.DeadRabbit.com Email: DeadRabbitRadio@gmail.com Twitter: https://twitter.com/DeadRabbitRadio Facebook: www.Facebook.com/DeadRabbitRadio TikTok: https://www.tiktok.com/@deadrabbitradio Dead Rabbit Radio Subreddit: https://www.reddit.com/r/DeadRabbitRadio/ Paranormal News Subreddit: https://www.reddit.com/r/ParanormalNews/   Mailing Address Jason Carpenter PO Box 1363 Hood River, OR 97031   Paranormal, Conspiracy, and True Crime news as it happens! Jason Carpenter breaks the stories they'll be talking about tomorrow, assuming the world doesn't end today. All Contents Of This Podcast Copyright Jason Carpenter 2018 - 2025   ------------------------------------------------ Logo Art By Ash Black Opening Song: "Atlantis Attacks" Closing Song: "Bella Royale" Music By Simple Rabbitron 3000 created by Eerbud Thanks to Chris K, Founder Of The Golden Rabbit Brigade Dead Rabbit Archivist Some Weirdo On Twitter AKA Jack Youtube Champ: Stewart Meatball Reddit Champ: The Last747 The Haunted Mic Arm provided by Chyme Chili Forever Fluffle: Cantillions, Samson, Gregory Gilbertson, Jenny The Cat Discord Mods: Mason http://www.DeadRabbit.com Email: DeadRabbitRadio@gmail.com Twitter: https://twitter.com/DeadRabbitRadio Facebook: www.Facebook.com/DeadRabbitRadio TikTok: https://www.tiktok.com/@deadrabbitradio Dead Rabbit Radio Subreddit: https://www.reddit.com/r/DeadRabbitRadio/ Paranormal News Subreddit: https://www.reddit.com/r/ParanormalNews/   Mailing Address Jason Carpenter PO Box 1363 Hood River, OR 97031   Paranormal, Conspiracy, and True Crime news as it happens! Jason Carpenter breaks the stories they'll be talking about tomorrow, assuming the world doesn't end today. All Contents Of This Podcast Copyright Jason Carpenter 2018 - 2025

What if your symptoms weren't isolated… but signals in a much larger system breakdown? In this wide-ranging solo Q&A, Dr. Linda Bluestein uncovers the hidden threads connecting uncontrolled pain before surgery, unexplained eye issues, MCAS, multiple chemical sensitivity, Alpha-gal syndrome, and even autism risk. From the scar tissue no one warned you about to the medication that works—but doctors won't prescribe—it's all here. Dr. Bluestein shares eye-opening research on TILT (Toxicant-Induced Loss of Tolerance), fragrance-triggered flares, and why standard pre-op care fails patients with connective tissue disorders. And woven throughout it all? The heavy, frustrating stigma that people with Ehlers-Danlos syndromes and hypermobility spectrum disorders know too well—being dismissed, doubted, and disbelieved. This episode doesn't just give answers. It reveals what questions you should have been asking all along. Takeaways: This one over-the-counter product might be behind your chronic eye issues—and no one's talking about it. Considerations and cautions for taking cromolyn A “safe” eye ointment led to lasting damage—here's why. Doctors say no to pain meds before surgery… but do they know the full risk? A tick bite and subsequent food allergy changes everything—even your shampoo. Find the episode transcript here. Reference Links: EP 140 with Dr. Brayden P. Yellman: https://youtu.be/mMMM7gmyrbk EP 127 with Dr. Emily Bohan: https://youtu.be/9ngUY9VPRcc EP 125 with Dr. Satish Raj: https://youtu.be/2WuDkH1TDns EP 120 with Wendy Wagner: https://youtu.be/YeRfTiGkDuA EP 109 with Dr. Tina Wang: https://youtu.be/w6iGZzRa-Q0 EP 108 with Katie and Andrew Dettelbach: https://youtu.be/hu907Z4Ldk4 EP 92 with Dr. Lillian Holm: https://youtu.be/QR9PZoA2ku0 EP 83 with Jill Miller: https://youtu.be/e86nO9PlKfQ EP 81 with Lisa Ralston: https://youtu.be/PKMcEUGcDWY EP 75 with Dr. Patty Stott: https://youtu.be/C5cATkq1a_k Check out Refresh Celluvisc Eye Gel, OcuSoft Lid Scrub and the book, Holistic Pain Relief as well as her other favorites at Dr. Bluestein's Amazon Store https://amzn.to/3RAjueJ https://www.amazon.com/shop/hypermobilitymd Toxicant Induced Loss of Tolerance (TILT) Tests https://tiltresearch.org/self-assessment/ TILT Resources https://tiltresearch.org/resources/ Assessing Chemical Intolerance in Parents Predicts the Risk of Autism and ADHD in Their Children - PubMed Food Compatibility List https://www.twoalphagals.com/ https://www.veganmed.org/ YouTube Playlist on Moving with EDS  and HSD https://youtube.com/playlist?list=PLX9StmpQKW30miVUD3DHWXjLq_Vs2VKrF&si=qU66cuujtCG_PH1f Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority! Use this affiliate link for Algonot to get an extra 5% off your entire order: https://algonot.com/coupon/bendbod/ Connect with the HypermobilityMD:  YouTube: youtube.com/@bendybodiespodcast  Instagram: https://www.instagram.com/hypermobilitymd/  Facebook: https://www.facebook.com/BendyBodiesPodcast  X: https://twitter.com/BluesteinLinda  LinkedIn: https://www.linkedin.com/in/hypermobilitymd/  Newsletter: https://hypermobilitymd.substack.com/ Shop my Amazon store https://www.amazon.com/shop/hypermobilitymd Learn more about Human Content at ⁠http://www.human-content.com⁠ Podcast Advertising/Business Inquiries: ⁠sales@human-content.com⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links.

What if your symptoms weren't isolated… but signals in a much larger system breakdown? In this wide-ranging solo Q&A, Dr. Linda Bluestein uncovers the hidden threads connecting uncontrolled pain before surgery, unexplained eye issues, MCAS, multiple chemical sensitivity, Alpha-gal syndrome, and even autism risk. From the scar tissue no one warned you about to the medication that works—but doctors won't prescribe—it's all here. Dr. Bluestein shares eye-opening research on TILT (Toxicant-Induced Loss of Tolerance), fragrance-triggered flares, and why standard pre-op care fails patients with connective tissue disorders. And woven throughout it all? The heavy, frustrating stigma that people with Ehlers-Danlos syndromes and hypermobility spectrum disorders know too well—being dismissed, doubted, and disbelieved. This episode doesn't just give answers. It reveals what questions you should have been asking all along. Takeaways: This one over-the-counter product might be behind your chronic eye issues—and no one's talking about it. Considerations and cautions for taking cromolyn A “safe” eye ointment led to lasting damage—here's why. Doctors say no to pain meds before surgery… but do they know the full risk? A tick bite and subsequent food allergy changes everything—even your shampoo. Find the episode transcript here. Reference Links: EP 140 with Dr. Brayden P. Yellman: https://youtu.be/mMMM7gmyrbk EP 127 with Dr. Emily Bohan: https://youtu.be/9ngUY9VPRcc EP 125 with Dr. Satish Raj: https://youtu.be/2WuDkH1TDns EP 120 with Wendy Wagner: https://youtu.be/YeRfTiGkDuA EP 109 with Dr. Tina Wang: https://youtu.be/w6iGZzRa-Q0 EP 108 with Katie and Andrew Dettelbach: https://youtu.be/hu907Z4Ldk4 EP 92 with Dr. Lillian Holm: https://youtu.be/QR9PZoA2ku0 EP 83 with Jill Miller: https://youtu.be/e86nO9PlKfQ EP 81 with Lisa Ralston: https://youtu.be/PKMcEUGcDWY EP 75 with Dr. Patty Stott: https://youtu.be/C5cATkq1a_k Check out Refresh Celluvisc Eye Gel, OcuSoft Lid Scrub and the book, Holistic Pain Relief as well as her other favorites at Dr. Bluestein's Amazon Store https://amzn.to/3RAjueJ https://www.amazon.com/shop/hypermobilitymd Toxicant Induced Loss of Tolerance (TILT) Tests https://tiltresearch.org/self-assessment/ TILT Resources https://tiltresearch.org/resources/ Assessing Chemical Intolerance in Parents Predicts the Risk of Autism and ADHD in Their Children - PubMed Food Compatibility List https://www.twoalphagals.com/ https://www.veganmed.org/ YouTube Playlist on Moving with EDS  and HSD https://youtube.com/playlist?list=PLX9StmpQKW30miVUD3DHWXjLq_Vs2VKrF&si=qU66cuujtCG_PH1f Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority! Use this affiliate link for Algonot to get an extra 5% off your entire order: https://algonot.com/coupon/bendbod/ Connect with the HypermobilityMD:  YouTube: youtube.com/@bendybodiespodcast  Instagram: https://www.instagram.com/hypermobilitymd/  Facebook: https://www.facebook.com/BendyBodiesPodcast  X: https://twitter.com/BluesteinLinda  LinkedIn: https://www.linkedin.com/in/hypermobilitymd/  Newsletter: https://hypermobilitymd.substack.com/ Shop my Amazon store https://www.amazon.com/shop/hypermobilitymd Learn more about Human Content at ⁠http://www.human-content.com⁠ Podcast Advertising/Business Inquiries: ⁠sales@human-content.com⁠ Part of the Human Content Podcast Network FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links. Learn more about your ad choices. Visit megaphone.fm/adchoices

Sue from South Africa shared her experience with Ehlers-Danlos syndrome and multiple health challenges. Although she was diagnosed with Ehlers-Danlos syndrome only six years ago, she described being a fragile child with several physical abnormalities that went unnoticed by doctors. These included an indented sternum and a skin issue at the base of her spine. Growing up, she struggled with physical activities and faced bullying due to her abilities, which contributed to her emotional distress.Her health challenges continued into adolescence, exacerbated by a severe dog bite that led to post-traumatic stress disorder (PTSD), which was not recognized at the time. During her teenage years, she also battled insomnia, anxiety, and depression. Sue developed Lyme disease after a hiking trip, which led to chronic fatigue syndrome (ME/CFS) and other health issues linked to Ehlers-Danlos syndrome.Despite her struggles, Sue pursued education, ultimately earning degrees in psychology. Throughout her journey, she has become more aware of her physical and psychological challenges, working to advocate for herself and understand her conditions better.

Send us a textCould there be a deeper connection between hypermobility, fatigue, and your autoimmune symptoms?In this episode, I unpack the lesser-known links between Ehlers-Danlos Syndrome (EDS) and autoimmune conditions—exploring why so many people with joint hypermobility also struggle with gut issues, immune reactivity, fatigue, and nervous system dysregulation.We dive into:Why connective tissue fragility can lead to leaky gut and immune activationThe role of mast cell activation, POTS, and vagal nerve dysfunctionHow your family history (think scoliosis, frequent injuries, clicky joints) may hold important cluesWhy gluten can be an issue, even without coeliac diseaseMy go-to food, supplement, and lifestyle strategies for supporting this overlapYou'll also hear practical tips on bone broth, slow-cooked meals, magnesium, vagus nerve support—and how to reframe your diagnosis as a doorway to deeper healing.Mentioned in this episode:Ossa Organics Bone Broth – use code VJ10 for 10% offNurosym vagus nerve stimulation – code VJ10 for 10% offBodyBio supplements – including magnesium and butyrate for gut + tissue support: Click here for UK / Click here for US (discount code VJ15)Join the conversation inside The Autoimmune Forum Whether you've been diagnosed with EDS, suspect hypermobility, or simply want to understand your autoimmune body more deeply—this one's for you.Thanks for listening! You can join The Autoimmune Forum on Facebook or find me on Instagram @theautoimmunitynutritionist.

Do you get full body pain? Does it affect your muscles, nerves or joints? Do you find that you need to rest after walking or find you tired more easily than others?It might not just be endometriosis. Ehlers-Danlos Syndrome is a group of 13 conditions which all affect connective tissue (collagen) in the body. Most are rare, but one type called hypermobility EDS is common - and out of those with this type of EDS, 6-23% have endometriosis. But that's not where the connection ends…32-77% of those with EDS have vulvodynia and or pain with sex.33-75% have heavy menstrual bleeding. 73-93% have painful periods.Additionally, histamine intolerance caused by Mast Cell Activation Syndrome is a co-condition of Ehlers-Danlos syndrome, and we also know that overactive mast cells play a role in endometriosis. Not only can this cause more painful periods, but it can also create problems like allergies and eczema to name a few.Ehlers-Danlos Syndrome is also a huge risk factor for SIBO, and as you may now know, at present SIBO is estimated as affecting 80% of the endo population.I could go on with the overlapping symptoms and connections, but instead, I'll let you hear it first hand from Natalia Kasnakidis who is not only an endometriosis warrior, but is also living with Ehlers-Danlos syndrome, histamine intolerance and potentially postural tachycardia syndrome.In this episode we talk about:What the Ehlers-Danlos Syndromes are and how common they are.The signs and symptoms to look out for and Natalia's own experience with her symptoms.The journey she tool to diagnosis and her tips for getting diagnosed. The co-conditions of EDS and their symptoms. Her key strategies for living well with endometriosis and EDS.Show noteshttps://www.thelondonhypermobilityunit.co.ukhttps://join.sibosos.com/purchase/74117-Joint-Hypermobility-Syndromes?_ga=2.165935037.2051281346.1639065076-1956767515.1601293146Need more help or want to learn how to work with me?Free resources:This podcast! Endometriosis Net ColumnEndometriosis News ColumnNewsletterInstagramWays to work with me:This EndoLife, It Starts with Breakfast digital cookbookMasterclasses in endo nutrition, surgery prep and recovery and pain reliefLive and Thrive with Endo: The Foundations DIY courseOne to one coaching info and applicationThis episode is sponsored by BeYou Cramp Relief Patches. Soothe period cramps the natural way with these 100% natural and discreet menthol and eucalyptus oil stick on patches. Click here to find out more and to shop: https://beyouonline.co.uk/pages/how-it-worksProduced by Chris Robson

Hannah is still trying to live her life as any other 22 year old would, dancing with friends, enjoying the outdoors, and loving the cows on her family farm. She hopes to share this positive view of life with chronic illnesses on her public Instagram page beyond.the.label_0 to help show other young people with challenging diagnosis that joy and a life worth living are still possible.  In this episode of the Major Pain podcast, she took a few minutes to talk to us about her journey with vascular Ehlers-Danlos syndrome from a lake near her home in Tennessee. Hannah started life as a perfectly healthy kid playing basketball, softball, cheerleading, and getting into trouble on the farm.  Even then she watched her brother struggle with seizures and a difficult road to diagnosis that ended with Chiari malformation and tethered cord syndrome.  When she got a concussion at the age of 13 everything seemed to change, and Hannah was also diagnosed with both Chiari and tethered cord, in addition to vascular Ehlers-Danlos syndrome (VEDS). She would later be diagnosed with postural orthostatic tachycardia syndrome (POTS) and is exploring the possibility that she may have mast cell activation syndrome (MCAS).  Her doctors narrowed in on the vascular form of EDS when she was 16 and began having pain, fever, and illness with her periods which became unpredictable, either missing months at a time or lasting up to a year of continuous bleeding. After many surgeries to release the Chiari, fuse vertebrae, release the tethered cord, and a difficult decision to have a hysterectomy at age 19 to resolve her constant bleeding, Hannah still would not change a thing.  Though she used to wonder why god would do this to her, she now sees the good that can come from perseverance.  She talks us through her history with VEDS, tells us about her medications and coping mechanisms, as well as how her chronic illness journey has strengthened her faith.  With her long term boyfriend and service dog at her side, Hannah is a resource for other patients going through similar life challenges as she continues to find what her future will bring. PlayWatch the episode on YouTube, or listen on your favorite podcast platform.

Why do some patients struggle with anesthesia, requiring multiple cartridges just to get numb? Could your TMD patients have an underlying systemic condition that's been missed? Are you overlooking the signs of a connective tissue disorder? https://youtu.be/gaoJKPTV_Z0 Watch PDP222 on Youtube ”When you can't connect the issue, think connective tissue!” Dr. Audrey Kershaw joins Jaz for a fascinating deep dive into the world of connective tissue disorders and their hidden impact on dentistry. Together, they explore how hypermobility, unexplained joint issues, and even a history of spontaneous injuries could be key indicators of an underlying disorder. They also break down why dentists play a crucial role in screening and identifying these conditions, ensuring better patient outcomes and a more holistic approach to care. Because sometimes, when things don't seem connected… they actually are. Protrusive Dental Pearl: Don't just take a "relevant" medical history—take a comprehensive one! Encourage patients to share all health issues, even those they don't think relate to dentistry. You might uncover important clues about conditions like connective tissue disorders or sleep-disordered breathing, leading to better care and stronger patient trust. Key Take-aways Ehlers-Danlos Syndrome is often misunderstood and underdiagnosed. Patients with connective tissue disorders often face skepticism from healthcare providers. POTS is a common condition associated with EDS that affects blood pressure regulation. Many TMD patients may have undiagnosed connective tissue disorders. Awareness and education about EDS are crucial for better patient outcomes. The healthcare system can be challenging for patients seeking diagnoses. Research on local anesthetic effectiveness in EDS patients is lacking. Personal experiences can help in understanding and diagnosing connective tissue disorders. Collaboration between healthcare professionals is essential for patient care. Genetic testing is crucial for diagnosing rare types of Ehlers-Danlos. Dental professionals should be aware of the signs of connective tissue disorders. Diagnosis can empower patients to understand their health better. Holistic care is vital in managing symptoms associated with EDS and TMD. Medical histories should be seen as relevant in dental practice. Highlights of this episode: 02:17 Protrusive Dental Pearl 04:21  Dr. Audrey Kershaw's Journey and Insights 09:45 Personal Experiences and Professional Observations 11:55 Diagnosis and Management of Connective Tissue Disorders 13:31 POTS (Postural Orthostatic Tachycardia Syndrome) 15:30 Understanding Ehlers-Danlos Syndrome (EDS) 24:55 Hypermobile EDS and the Need for Awareness 27:53 International Consortium of EDS GP Checklist 28:34 Genetic Testing and Red Flags 31:44 The Role of Dentists in Identifying EDS 40:32 Journey to Diagnosis 43:47 The Value of a Diagnosis 48:43 Dental Implications of EDS 55:00 Final Thoughts and Resources "If you know one case of EDS, you only know one. Every case is different. Many are severely debilitated, unable to work or carry out daily tasks, often denying their struggles after years of being dismissed." - Dr. Audrey Kershaw Promised Resources Podcast Recommendation: Linda Blustein's Podcast (about POTS and connective tissue disorders) Specialists & Research: Dr. Alan Hakim – A specialist in Ehlers-Danlos Syndrome (EDS) research based in London. Norris Lab (U.S.) – Researching genetic markers for hEDS Local Anesthesia Information Resources for Screening & Diagnosis:  Diagnostic Criteria for Hypermobile Ehlers-Danlos SyndromeDownload 5-part-questionnaire-for-hypermobilityDownload Symptomatic Joint-Hypermobility GuideDownload Red Flag PatientsDownload Educational Conferences & Talks: Scottish Dental Show – Audrey is involved in raising awaren...

There's a bit of a parental feel about this week's podcast. Two mums from Nottingham were categorised in a hospital computer system as having learning disabilities and, they say, received poor treatment as a result. Claire Whyte and Elizabeth Jones are autistic but their local NHS trust only has the ability to (inappropriately) categorise them as having a learning disability, because there is no neurodivergent box to tick on the system. They say they were spoken to in simplified language and had decisions about their care made without consulting them. As a result, they felt patronised and left out of their own maternity care. Presenter Emma Tracey speaks to them and we get a response from the NHS and the company, System C, who make the app. Emma also speaks to Jessica Slice, author of newly published and ironically titled book Unfit Parent: A Disabled Mother Challenges an Inaccessible World. In it she maintains that disabled people are unusually placed to have the skills to be parents. She says her life as someone with POTS and Ehlers-Danlos syndrome, has made her more resilient, patient, tolerant of pain, and thinks disabled people shouldn't be written off as mums and dads ... and a whole lot more. Presenter: Emma Tracey Producer: Beth Rose Sound recording and mix: Dave O'Neill Editor: Damon Rose

"Susan Birth, Chief Executive of Ehlers-Danlos Support UK, explores the challenges faced by individuals with Ehlers-Danlos syndromes and hypermobility spectrum disorders, touching on symptom management, NHS navigation, and promising new research."

In this interview, Christie Uipi, LCSW, sits down with world-renowned mindbody physician Dr. Howard Schubiner to explore the limitations of the traditional medical model in treating conditions like POTS, Ehlers-Danlos syndrome, chronic Lyme disease, Epstein-Barr virus (EBV), mast cell activation syndrome (MCAS), ME/CFS, and Long COVID. Together, they discuss how a mindbody approach can bring clarity to these often confusing conditions - and offer a hopeful path forward for those seeking relief.

In the first part of our four part Case Files series diving into the upcoming lawsuit against Rady Children's in San Diego, Andrea and Dr. Bex start with looking into preteen Madison Meyer's string of diagnoses like Ehlers-Danlos syndrome, POTS, CRPS, and more. They break down what these conditions are and why they - coupled with Madison's rapid decline - raised red flags.  *** Follow Dr. Bex on instagram: @secretdoctorbex Order Andrea's new book The Mother Next Door: Medicine, Deception, and Munchausen by Proxy.  Click here to view our sponsors. Remember that using our codes helps advertisers know you're listening and helps us keep making the show!   Subscribe on YouTube where we have full episodes and lots of bonus content.  Follow Andrea on Instagram: @andreadunlop Buy Andrea's books here.  For more information and resources on Munchausen by Proxy, please visit MunchausenSupport.com The American Professional Society on the Abuse of Children's MBP Practice Guidelines can be downloaded here. Learn more about your ad choices. Visit podcastchoices.com/adchoices

In questa puntata sentirete la storia di Martina Rosaci, parlerà delle sue diagnosi di Sindrome di Ehlers Danlos, Disautonomia, TSI, POTS, e sindrome da fatica cronica.

What happens when illness hijacks your love story? In this raw and revealing episode, Dr. Linda Bluestein sits down with therapists and real-life couple Melissa Dickinson and Tom Query, who know firsthand how Ehlers-Danlos syndrome can test—and transform—a relationship. From secret diagnoses to unexpected intimacy challenges, they open up about their personal journey navigating chronic illness, caregiving, trauma, and neurodivergence while maintaining connection, humor, and purpose. But it doesn't stop there. You'll hear about the surgery that changed everything, a community built from the ground up, and what it means to reclaim agency in a body that feels like it's working against you. Whether you're chronically ill, caregiving, or just curious—this episode will stay with you. Takeaways: What if the love of your life was diagnosed after your wedding… would you stay? This surgery gave her legs—and her life—back. They gave their illness a name… and it changed how they fought it. The hardest part of caregiving isn't what you think. Sometimes, even therapists need help decoding each other. Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Find the episode transcript here. Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority! Learn about Melissa Dickinson & Tom Query: Melissa: Facebook: https://www.facebook.com/melissadickinsonEDSofGA/ LinkedIn: https://www.linkedin.com/in/melissadickinsonlpc/ Website: www.MelissaDickinson.com Tom: Facebook: https://www.facebook.com/wellspringcounselingintown Website: https://www.tomquery.com Keep up to date with the HypermobilityMD: YouTube: youtube.com/@bendybodiespodcast Twitter: twitter.com/BluesteinLinda LinkedIn: linkedin.com/in/hypermobilitymd Facebook: facebook.com/BendyBodiesPodcast Blog: hypermobilitymd.com/blog Learn more about Human Content at http://www.human-content.com Podcast Advertising/Business Inquiries: sales@human-content.com Part of the Human Content Podcast Network Learn more about your ad choices. Visit megaphone.fm/adchoices

What happens when illness hijacks your love story? In this raw and revealing episode, Dr. Linda Bluestein sits down with therapists and real-life couple Melissa Dickinson and Tom Query, who know firsthand how Ehlers-Danlos syndrome can test—and transform—a relationship. From secret diagnoses to unexpected intimacy challenges, they open up about their personal journey navigating chronic illness, caregiving, trauma, and neurodivergence while maintaining connection, humor, and purpose. But it doesn't stop there. You'll hear about the surgery that changed everything, a community built from the ground up, and what it means to reclaim agency in a body that feels like it's working against you. Whether you're chronically ill, caregiving, or just curious—this episode will stay with you. Takeaways: What if the love of your life was diagnosed after your wedding… would you stay? This surgery gave her legs—and her life—back. They gave their illness a name… and it changed how they fought it. The hardest part of caregiving isn't what you think. Sometimes, even therapists need help decoding each other. Connect with YOUR Hypermobility Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/. Thank YOU so much for tuning in. We hope you found this episode informative, inspiring, useful, validating, and enjoyable. Join us on the next episode for YOUR time to level up your knowledge about hypermobility disorders and the people who have them. Find the episode transcript here. Join YOUR Bendy Bodies community at https://www.bendybodiespodcast.com/. YOUR bendy body is our highest priority! Learn about Melissa Dickinson & Tom Query: Melissa: Facebook: https://www.facebook.com/melissadickinsonEDSofGA/ LinkedIn: https://www.linkedin.com/in/melissadickinsonlpc/ Website: www.MelissaDickinson.com Tom: Facebook: https://www.facebook.com/wellspringcounselingintown Website: https://www.tomquery.com Keep up to date with the HypermobilityMD: YouTube: youtube.com/@bendybodiespodcast Twitter: twitter.com/BluesteinLinda LinkedIn: linkedin.com/in/hypermobilitymd Facebook: facebook.com/BendyBodiesPodcast Blog: hypermobilitymd.com/blog Learn more about Human Content at http://www.human-content.com Podcast Advertising/Business Inquiries: sales@human-content.com Part of the Human Content Podcast Network Learn more about your ad choices. Visit megaphone.fm/adchoices

Send us a textIn this episode of the Next Level Human Podcast, Dr. Jade Teta interviews Natalie Pendergrass, who shares her inspiring journey of overcoming chronic pain and trauma through resilience, yoga, and mindfulness. Natalie discusses her experience with Ehlers-Danlos syndrome, the healing power of yoga, and the importance of mental health in managing physical pain. She emphasizes the need for proper breathing techniques and strength training for those with hypermobility disorders, and how acceptance and clearing toxic relationships can lead to empowerment and healing.00:01:25 Natalie's Childhood and EDS Diagnosis00:08:32 Living with Chronic Pain and Abuse00:14:50 Discovering Yoga and Unexpected Flexibility00:21:40 The Power of Proper Breathing00:28:00 Finding Solutions Through Adversity00:35:36 Keys to Healing: Mindset and Movement00:44:05 Creating a Life Beyond Limitations Looking for a Next Level Human Coach? Get on the waitlist and get access to the brand-new science of quantum metabolism and identity restructuring with Dr Jade and the team.http://nextlevelhuman.com/human-coaching Want to become a Next Level Human Coach? Get on the waitlist. Go to: http://www.nextlevelhuman.com/human-coach Connect with Next Level HumanWebsite: www.nextlevelhuman.comsupport@nextlevelhuman.comConnect with Dr. Jade TetaWebsite: www.jadeteta.comInstagram: @jadeteta

An episode that turns the hands of time. Here's what's in store for today's episode: * On today's episode of The Autistic Culture Podcast, Matt and Angela take a deep dive into executive functioning and how it shifts over time as we age.* Our hosts explore the evolving demands on executive functioning, from managing basic hygiene and meals to handling responsibilities like paying rent, bills, driving, and working as we grow older.* We discuss how advancements in technology and evolving systems have increased executive functioning demands—such as navigating self-checkout, managing multiple streaming service payments, and handling other modern responsibilities.* Then, we dive into unsolicited neurotypical advice on managing executive function—like “just use a calendar” or the dreaded “think positively!”—and why these suggestions often miss the mark.* We then explore the connection between executive functioning and autistic inertia, as well as how body doubling can be a helpful strategy.* Next, we discuss masking in the corporate world and why it simply doesn't work for autistic individuals.* Our hosts share their personal unmasking journeys and discuss how to navigate the shift toward authenticity.* We then dive into the often comorbid health conditions that commonly accompany autism, including but not limited to PMDD, POTS, Ehlers-Danlos syndrome, and Mast Cell Activation Syndrome.* Finally, we discuss the impact of trauma and CPTSD on autistic lives, as well as the intersection of autism and menopause.“When you get older and you have the kids and you have the house and you have the job and the responsibilities - that's when the executive functioning fails.” - Matt“This is also a reason why the unemployment rate for autistics is much higher than for neurotypicals. It doesn't mean that you're a bad person. It doesn't mean that you're lazy. It doesn't mean that you don't have intellectual functioning ability. It's just that you're working with a lot more system requirements. You can't play the game that other people play because your PC is maxed out with all these other system requirements and other people aren't.” - MattDid you enjoy this episode? We explored executive functioning in autistic lives, from shifting responsibilities as we age to the impact of masking, comorbid conditions, and trauma. Tune in as we discuss strategies like body doubling and unmasking, and share your thoughts using #AutisticCultureCatch!Show Notes:https://autismspectrumnews.org/the-complexities-of-aging-addressing-the-unique-needs-of-autistic-elders/ https://aidecanada.ca/resources/learn/asd-id-core-knowledge/shared-stories-shared-experiences-international-research-on-autism-and-menopauseRelated Episodes:Productivity is AutisticMeat Body MaintenanceFollow us on InstagramFind us on Apple Podcasts and SpotifyLearn more about Matt at Matt Lowry, LPPJoin Matt's Autistic Connections Facebook GroupLearn more about Angela at AngelaKingdon.com Angela's social media: Twitter and TikTokOur Autism-affirming merch shop This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit www.autisticculturepodcast.com/subscribe

Carolyn McMakin, MA, DC - frequencyspecific.com 00:47 Patient Stories: Ehlers Danlos and Dural Adhesions 03:32 Case Study: Treating a Complex Ehlers Danlos Patient 13:36 Rant on Medical Mismanagement 15:43 Q&A Session: Nerve Pain and Treatment Protocols 21:41 Upcoming Events and Symposium Highlights 27:15 Understanding Calcified Tendons 27:40 Treating Calcific Tendonitis 28:29 Realistic Expectations for Tendon Healing 30:05 Introduction to Tarlov Cysts 31:17 Mechanism and Treatment of Tarlov Cysts 33:58 Scheduling and Availability 36:24 FSM for Emotional Regulation and Focus 42:57 Case Study: Rat Poisoning and Renal Failure 51:38 Ramsay Hunt Syndrome and Cranial Nerve Issues 55:10 Detoxing Anesthesia Post-Dental Procedure To maximize the potential benefits of Frequency Specific Microcurrent (FSM) in your medical practice, we encourage you to share this invaluable knowledge. By liking, subscribing, and engaging with our content, you'll stay informed and help spread these insights to other practitioners who seek to improve patient care. **Innovative Treatments and Patient Stories** Dr. Carol McMakin provides an in-depth narration of recent experiences with patients, particularly emphasizing advanced FSM techniques. One significant case involves an Ehlers-Danlos patient who achieved remarkable pain relief through targeted FSM protocols focusing on dura adhesions and spinal fluid dynamics. Dr. McMakin explains the process and frequencies used, highlighting the importance of thorough physical examinations to tailor treatments effectively. **The Essential Role of Physical Exams** A crucial theme in the discussion is the necessity for comprehensive physical exams in chronic pain management. Dr. McMakin recounts a patient misdiagnosed over the phone with Ehlers-Danlos, emphasizing the failure of prior healthcare providers to perform physical exams leading to prolonged patient suffering. Through detailed examinations and FSM, profound improvements were noted, underscoring the critical role of a hands-on approach in diagnosing and treating pain syndromes. **Addressing Complex Conditions** - **Ramsay Hunt Syndrome:** Dr. McMakin shares strategies for addressing conditions like Ramsay Hunt Syndrome, which involves postherpetic neuralgia affecting cranial nerves. Utilizing FSM to target the pons and medulla helps manage symptoms comprehensively. - **Tarlov Cysts:** For conditions such as Tarlov Cysts, the approach involves treating scarring in the dura and arachnoid, facilitating movement and reducing symptoms. - **Managing Stress Incontinence:** Addressing issues such as stress incontinence requires a multifaceted approach involving the pelvic floor muscles and sympathetic nervous pathways, along with FSM protocols to support muscle and nerve health. **FSM in Practice: Upcoming Developments** The insights shared also introduce practitioners to the exciting future of FSM seminars, highlighting a comprehensive Advanced in Symposium set to deepen knowledge and application of FSM in clinical practice. This upcoming event will provide an expanded curriculum, enabling practitioners to refine their skills with the most up-to-date FSM techniques. **Emphasizing Patient-Centric Care** Practitioners are encouraged to adopt a patient-centric approach, leveraging FSM as a tool within a broader care strategy that includes patient education, lifestyle adaptations, and collaboration with other healthcare professionals. By integrating these elements, medical practice can be enriched, offering patients a more holistic and effective treatment experience. Incorporating FSM into clinical practice holds significant promise for enhancing patient outcomes. By staying informed and continuously developing skills in FSM, practitioners can harness this technology's full potential to address a wide array of complex medical conditions. Keep exploring, learning, and sharing, as together, we can change lives and elevate the standards of care.

In this episode, Molly shares her unique journey of living with an ostomy, starting from her childhood struggles with chronic constipation to her eventual ileostomy surgery. She discusses the challenges she faced, the importance of community support, and how her perspective on life has changed since her surgery. Molly emphasizes the significance of mental health and acceptance in navigating life with an ostomy, and she inspires listeners to embrace their journeys and seek support.TakeawaysMolly's journey began with chronic constipation from birth.She faced numerous medical challenges before her ileostomy surgery.The ostomy community is supportive and empowering.Living with an ostomy has improved Molly's quality of life.Mental health is crucial in the journey of acceptance.Finding a support system can help process emotions.Molly's condition is linked to Ehlers-Danlos syndrome.She encourages others to share their stories and connect.Ostomy is not a death sentence, but a life sentence.Authenticity and openness can inspire others.

If your body is super reactive… even the tiniest change can set off awful symptoms – then you should consider the spectrum of mast cell activation diseases.What most people find enjoyable, like healthy foods, exercise, or even sunlight, can make some feel horrible. Often these symptoms are beyond just “histamine intolerance symptoms.”And while others around you might think you're just “being dramatic” or “making a mountain out of a molehill,” it's clear to you that your body is extremely more reactive than others.It can be hard to get a clear diagnosis and help if you are struggling with mast cell activation diseases – including those with hypermobility syndrome issues like Ehlers-Danlos.If your life feels like you're constantly navigating a minefield of unexpected symptoms to the smallest things, I'm joined by Michelle Shapiro, RD, to talk about what causes you to have a “highly sensitive body.”Michelle Shapiro, RD is an Integrative/Functional Registered Dietitian in NYC who has helped over 1000+ clients reverse their anxiety, heal long-standing gut and immune issues, and approach their weight in a loving way. Michelle has a virtual private practice of 5 nutritionists where she and her team work one-on-one towards these goals. She is the host of the Quiet the Diet Podcast, where she helps listeners bridge the gap between body positivity and functional nutrition.If you've been searching for answers about your own body's unpredictable reactions or want to better understand these complex conditions, let's dive in!In This Episode:What's a “highly sensitive body” problem (that you'll be stuck with forever)?The role of mast cells as “guards” of your immune systemHistamine intolerance symptoms (and why a histamine intolerance diet doesn't help long-term)Histamine intolerance versus Mast Cell Activation DiseasesThe surprising link between MCAS, POTS, and hypermobility syndromeWhy POTS isn't a heart problemThe long COVID–histamine intolerance connectionPractical tips for managing symptoms histamine intolerance symptomsQuotes“Highly sensitive bodies often react in ways we don't expect—things that are supposed to be good for you, like healthy foods or exercise, can make you feel worse.”“Histamine issues don't just cause rashes or itchy skin; they can trigger severe insomnia, anxiety, and even psychosis.”LinksFind Michelle online | InstagramMichelle's podcast, Quiet the DietMichelle's Highly Sensitive Body Hub WaitlistHealthy Skin Show ep. 319: Mast Cell Activation Syndrome: What is MCAS + Why It's So DevastatingHealthy Skin Show ep. 166: Mold + Histamine ConnectionReady to figure out your skin's root causes so you can finally fix your skin + break free from meds to manage your skin?My virtual clinic works with adults worldwide struggling with eczema, psoriasis, rosacea, urticaria, hives, dandruff, perioral dermatitis + more.Trusted by over 1000 clients, we get results WITHOUT restrictive elimination diets.Schedule an assessment call at https://skinrepaircall.com/

Jenn from Canada shared her experience with mast cell activation syndrome (MCAS) and Ehlers-Danlos syndrome (EDS). She described experiencing symptoms of disautonomia and dislocations from a young age. Her health challenges worsened during her teen years with symptoms such as mold exposure, recurrent hospitalizations for mystery illnesses, and autoimmune-related issues. It wasn't until two years ago that she was diagnosed with MCAS after discovering hidden mold in her home. After consulting with an allergist and starting on a personalized treatment cocktail, including low-dose naltrexone (LDN), she noticed improvements in her chronic headaches, sleep, and other symptoms. The LDN helped alleviate her symptoms more than she expected and significantly improved her quality of life.

This week we discuss the basics about a topic several of our guests have spoken about- Ehlers Danlos Syndrome or EDS.   ​Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provide strength and elasticity to the underlying structures in your body. ​The Ehlers-Danlos syndromes received a major overhaul in 2017 and this is what we now know: EDS are heritable connective tissue disorders affecting the quality of collagen in every part of the body. There are now 13 recognized subtypes of EDS, 12 of which are genuinely rare and have the aberrant gene identified. Hypermobile EDS (hEDS) and hypermobility spectrum disorder (HSD) is by far the most common type; these conditions are part of a spectrum and the distinction is hoped to be useful for research, but is otherwise academic. hEDS/HSD is a multi-system disorder which can have a marked impact on health and which may help us to explain apparently mysterious multiple symptoms. Don't let the changing terminology confuse you. 3.4% of the population have generalized joint hypermobility and chronic widespread pain (a proxy for the now obsolete diagnosis of joint hypermobility syndrome (JHS). Patients who in the past received a diagnosis of JHS (or Benign JHS), EDS-Hypermobility Type or EDS Type III would now be categorized as having hEDS or HSD. “If you can't connect the issues, think connective tissues” Non-specific and medically unexplained symptoms are usually real and should not be dismissed It can be easy to make a big difference to the quality of life of some of your most complex patients with a few simple and inexpensive measures, but the journey starts with recognition. The median time from symptom onset to seeking a GP opinion is 2 years and the median time to diagnosis 10 years. If we make an early diagnosis and manage the conditions appropriately, there may be potential to reduce long term disability which can occur from EDS. Enquire about family members; these are hereditary disorders of connective tissue so positive family histories are common. Although no gene has yet been identified, hEDS is primarily of autosomal dominant inheritance. Children can present with symptoms of hEDS/HSD, including abdominal symptoms or growing pains. They may also present with neurodevelopmental disorders such as hyperactivity, inattention, dyspraxia, autistic spectrum disorder, sleep, and food issues, emotional problems, hypersensitivity and anxiety. A low Beighton score does not exclude hEDS/HSD,. Patients stiffen with age so their Beighton score may decrease, although pain may worsen. The extent of multi-system symptoms is not related to the Beighton score. Consider co-existing conditions; In recent years, we have begun to understand more about associated or co-morbid conditions which are frequently found in people with hEDS, including autonomic dysfunction (postural tachycardia syndrome (PoTS) and symptomatic low blood pressure), mast cell activation syndrome (MCAS) and gastrointestinal dysfunction. (Credits: GPTOOLKIT)

An episode that checks all the vital signs.Here's what's in store for today's episode: * Today, our hosts dive into part two, a follow-up to our previous episode on autistic medical needs.* Autistic people often experience comorbid conditions, many of which stem from the distressing effects of navigating a neurotypical world. These can include POTS, MCAS, PMDD, PCOS, PTSD, and Ehlers-Danlos syndrome, among others. On the bright side, we're at a lower risk for cancer!* Living in a world designed for neurotypicals is inherently traumatic for autistic people, often leading to chronic stress that impacts our physical health. This distress can contribute to comorbid conditions like POTS, MCAS, and Ehlers-Danlos syndrome, making medical advocacy a crucial but often exhausting necessity.* We discuss the pathological demand compliance that neurotypicals seem to exhibit, blindly following societal expectations without questioning them. This tendency contrasts with autistic people's need to understand the why behind demands, making medical self-advocacy even more challenging.* Bottom-up processing means we're constantly researching and analyzing potential medical issues, often coming to our own conclusions before seeing a doctor. However, the medical system doesn't always operate this way, making it frustrating when our self-advocacy is dismissed or misunderstood.* Neurotypical doctors, due to the intensity and nature of their training, can carry a lot of internalized ableism. As a result, they don't always react well to autistic patients who have done their own research and come prepared with information about their condition.* We talk about the issue of medical gaslighting and how it happens frequently to autistic people, where our symptoms and concerns are dismissed or belittled by healthcare professionals.* Additionally, systemic racism remains rampant in the medical field alongside ableism, further complicating the already difficult experience for multiply marginalized autistic people seeking proper care and recognition of their needs.* Our hosts discuss the issues with medication, highlighting how it's often more hit or miss than many would like to believe, especially when it comes to finding the right treatment for autistic individuals.* We talk about how frustrating it is when you have to be assertive about your needs at the doctor's, only to have it perceived as aggression, even though you're just advocating for your health.* There is an importance now more than ever to teach neurotypical healthcare providers how to properly interact with their neurodivergent patients, ensuring they feel heard, understood, and respected in their medical care.* We discuss the struggle of having to mask in doctor's offices and the importance of doing your own research to accompany doctor's visits, as it's often necessary to ensure your concerns are taken seriously.* Going to the doctor's is a masterclass in masking—showing just the right amount of emotion and care to avoid being seen as too detached or overly emotional, all while trying to communicate your needs effectively.* Our hosts discuss how to "fake" being neurotypical by understanding the intricacies of top-down processing, where we learn to mimic expected behaviors and responses, even if they don't come naturally to us.* Having autistic connections is so important because when we find a provider who is autism-affirming or discover medical information that could help our community, we need to shout it from the rooftops to ensure everyone has access to that support.* In times like these, especially with medical situations and the ongoing DEI crisis, we need to lean on our communities more than ever for support, knowledge, and solidarity.“We like to be in the background. We like to be in the shadows. We like to not be judged, because it's safer there. Because otherwise, there is a chance that we will be judged, we will be left out, people will actively dislike us. But, if we are invisible, there's no chance for that to happen.” - Matt“Living in a neurotypical world is inherently traumatic for us. The CPTSD rate is so high for autistic people that neurotypical people can't tell what's CPTSD and what's autism traits. That's the thing about the anxiety and the depression and the gastrointestinal distress and all of this stuff. It's not normal autistic stuff. It's autistic distress cues.” - Matt“The bias is that, ‘if there's a way to fix it easily, then let's fix it easily.' And I don't think that's wrong, but it ends up feeling a whole lot like gaslighting and being pushed away when we know real things are happening.” - Angela “But here's the thing, because you don't know you as well as this doctor knows you, because this doctor has a degree and went to school and they know all the things. They are God-like.” - MattDid you enjoy this episode? We dive into the challenges of navigating a neurotypical world with a neurodivergent brain, exploring the medical hurdles and advocacy we face. From medical gaslighting to the struggles of masking in doctor's offices, we discuss how these issues impact our health and well-being. Let us know your thoughts in the comments, and use #AutisticCultureCatch to share your experiences and connect with others on social media!Related Episodes: Autistic Medical NeedsReady for a paradigm shift that empowers Autistics? Help spread the news!Follow us on InstagramFind us on Apple Podcasts and SpotifyLearn more about Matt at Matt Lowry, LPPJoin Matt's Autistic Connections Facebook GroupLearn more about Angela at AngelaKingdon.com Angela's social media: Twitter and TikTokOur Autism-affirming merch shop This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit www.autisticculturepodcast.com/subscribe

Are you finally ready to overcome your chronic pain? Save 15% on any Whealth Program using code KELSIESTONE at checkoutKelsie Stone, Whealth Hypermobility Program member writes:"I have a painful connective tissue disease called Hypermobile Ehlers-Danlos Syndrome.Doctors called me a “moderate-to-severe” case. Chronic pain changed the physical structure of my brain – I was diagnosed with medically-induced c-PTSD.The pain was so constant that I broke my spine in three places and DIDN'T NOTICE. Doctors found it by accident after it already healed. hEDS and this pain made me think:Doctors told me: "You'll never have kids, never get married. You're too much of a burden. You'll suffer your whole life."Doctors didn't say much different than these thoughts. They offered narcotics. Injections. Surgeries. Treating symptoms, not the source. Then I noticed this strength-training program called Whealth on my timeline.Week after week, I saw free educational content on IG – and I started to wonder.Doctors commanded me not to work out, but this program claimed to be created by hypermobile people – people like me – specifically FOR us, and I had to know if it was real. So I took the plunge. I could always get a refund, right?Three 30-minute home workouts a week later… and my life has changed more than I ever knew it could. I'm strong now. I'm proud of my body. It seems unbelievable, but I feel like I blinked and got stronger.I do the things I love just like I used to, but the difference is I don't pay the price anymore.

Soph Myers-Kelley and his mom, René Myers, have always been close. As of five years ago, they also share a diagnosis: the connective tissue disorder Ehlers-Danlos Syndrome. Soph and René were diagnosed one year apart – Soph was 25; René was 60. EDS explained symptoms they'd both been experiencing for decades, including waking up with jaw or shoulder dislocations and having chronic pain.The two talk with Anita about how their diagnoses began a new chapter of their lives, including the decision to move in together last summer.Meet the guests:- Soph Myers-Kelley is a medical librarian at East Carolina University- René Myers is Soph's mom and a retired educatorRead the transcript | Review the podcast on your preferred platformFollow Embodied on Instagram Leave a message for Embodied

In this episode, I sit down with Dr. Michael Lenz, a physician specializing in pediatrics, internal medicine, lifestyle medicine, and lipidology. Dr. Lenz is the author of Conquering Your Fibromyalgia and host of the podcast by the same name. His passion for lifelong learning and holistic patient care has led him to specialize in chronic pain syndromes — conditions that are often misunderstood, misdiagnosed, and dismissed by the medical community.Together, we explore:The different types of pain — nociceptive, neuropathic, and nociplastic — and why understanding these distinctions is crucialHow chronic pain conditions like fibromyalgia, POTS, Ehlers-Danlos syndrome (EDS), mast cell activation syndrome (MCAS), and migraines often intersect with neurodivergenceWhy so many autistic and ADHD individuals experience chronic pain and how sensory processing differences can complicate diagnosis and treatmentThe emotional and psychological impact of being dismissed by medical professionalsWhy outdated medical education and systemic gaps continue to leave neurodivergent patients struggling for validation and reliefDr. Lenz also shares insights from his clinical experience, including real patient stories that highlight the need for greater awareness, compassion, and interdisciplinary care. If you've ever felt unheard or gaslighted by the medical system — or if you want to understand the complex relationship between neurodivergence and chronic pain — this conversation is for you.Watch this episode on YouTube.Check out Dr. Michael Lenz's website: Conquering Your Fibromyalgia  Theme music: "Everything Feels New" by Evgeny Bardyuzha. All episodes written and produced by Kristen Hovet.Send in your questions or thoughts via audio or video recording for a chance to be featured on the show! Email your audio or video clips to otherautism@gmail.com through WeTransfer. Become a patron on Patreon!Buy me a coffee!Buy The Other Autism merch. Use code FREESHIP for free shipping on orders over $75 USD! The views, opinions, and experiences shared by guests on this podcast are their own and do not necessarily reflect those of the host or production team. The content is intended for informational purposes only and should not be taken as medical or professional advice. Please consult with a qualified healthcare provider before making any decisions related to your health, fitness, or wellness.

In this episode of The Beautiful Bag podcast, host and guest Brianna share an insightful conversation about living with an ostomy, her journey with Ehlers-Danlos syndrome, and the importance of raising awareness about ostomies. Brianna discusses her initial struggles, the adjustments she made after surgery, and how her perspective on life with a stoma has evolved over the years. She emphasizes that having an ostomy is not as daunting as many believe and shares her experiences to help others understand and accept their own journeys.TakeawaysBrianna has had her permanent ileostomy for over three years.She was diagnosed with Ehlers-Danlos syndrome, affecting her GI tract.Adjusting to life with an ostomy took time and patience.Brianna named her stoma Stella, which has become a part of her identity.She emphasizes the importance of raising ostomy awareness.Many people fear ostomies due to misconceptions about smell and lifestyle.Brianna's recovery journey included multiple surgeries and challenges.She has learned to navigate ostomy products and find what works best for her.Brianna encourages others to share their stories and experiences.Living with an ostomy can improve quality of life despite initial fears.

Text us your feedback on this episodeGet ready to be blown away by human resilience through the story of our special guest, Jenn Reno. Do you suffer from or know someone who is suffering with chronic pain and addiction looking for support, relief and healing? This episode is exactly where you're supposed to be.Jenn Reno is a Meditation Teacher, Reiki Healer, Sound Healer and Pain Warrior with Ehlers-Danlos syndrome (EDS). Connect with Jenn on Instagram to book your breathing and healing session…Timestamps to help you navigate this episode...0:00 Intro0:24 FREE Self Love & Sweat MONTHLY Calendar5:17 A Life Shaped By Nature16:21 Healing Through Meditation and Mindfulness33:49 Reiki, Sensitivity, and Self-Understanding43:31 The Gift of Mindfulness56:42 Empowerment Through Meditation and HealingIG: @‌jennrenoSupport the showFREE Self Love & Sweat Monthly Life Coaching Calendar: http://lifelikelunden.com/calendar2 FREE HIGH INTENSITY RESISTANCE TRAINING WORKOUTS: https://lifelikelunden.activehosted.com/f/169One-On-One Life Coaching & NLP with Lunden:http://lifelikelunden.com/vipConnect with Lunden:IG: @lifelikelundenYouTube: https://youtube.com/lundensouzaLinkedIN: https://www.linkedin.com/in/lundensouza/Twitter: @lifelikelundenUse code LUNDEN25 for a discount on Snap Supplements: https://bit.ly/snapsweatPodcast Sound Design Intro & Outro: https://hitspotaudio.com/

Welcome back to a newly relaunched ADHD Women's Wisdom episode! These are snippets from previous guests, bringing back their wisdom from the conversation so you can re-process their fascinating insights and essential knowledge to empower you with more awareness and support. If you've had ongoing and unexplained chronic pain, fatigue, gut issues, dizziness, anxiety, dislocations, sprains or aching joints, you may be interested in this week's episode discussing the intersection of Ehlers-Danlos Syndromes, Hypermobility and neurodivergence. This week's Wisdom guest is Dr Jessica Eccles, a Clinical Senior Lecturer at Brighton and Sussex Medical School in the Department of Neuroscience. Her research is on brain-body interactions, particularly related to joint hypermobility. She is an adult liaison psychiatrist and consultant in the Sussex Neurodevelopmental Service and co-lead of their Neurodivergent Brain Body Clinic.Dr. Eccles highlights the prevalence of hypermobility and its association with various symptoms, including chronic pain and fatigue, which can significantly impact individuals' quality of life. Furthermore, she emphasizes the importance of understanding these interconnections, particularly as they relate to neurodivergent individuals who may experience compounded difficulties. On today's ADHD Women's Wellbeing Podcast, Kate Moryoussef and Dr Jessica Eccles talk about: The intricate relationship between neurodivergence and hypermobility. The complexities surrounding hypermobility, including its diagnosis and associated symptoms. Resources that can facilitate understanding and management of hypermobility symptoms. The prevalence of hypermobility in neurodivergent populations emphasises the need for further research. Individuals with hypermobility may experience a spectrum of symptoms requiring tailored management strategies. Advocating for increased awareness and education among healthcare providers regarding hypermobility and its implications. What is Ehlers-Danlos syndrome (EDS)The symptoms, challenges and advantages of hypermobilityThe link between (H)EDS, hypermobility and ADHD/neurodivergenceSide effects of hypermobilityThe interlinks of hypermobility and neurodivergenceHormones, EDS and hypermobility frequency in women and how it presents differently in menFibromyalgia, hypermobility and ADHD connectionsLooking for support? Join my brand-new online coaching programme, From Burnout to Activating Your ADHD Brilliance. Starting on 3rd March, this will be an intimate and personalised coaching experience for only 10 women. Find Kate's popular online workshops and free resources here.Kate Moryoussef is a women's ADHD lifestyle and wellbeing coach and EFT practitioner who helps overwhelmed and unfulfilled newly diagnosed ADHD women find more calm, balance, hope, health, compassion, creativity and clarity. Follow the podcast on Instagram.Follow Kate on Instagram.Companies mentioned in this episode: EDS UK EDS Society SEDS Connective Links referenced in this episode:

In this episode of the LeggLife Podcast, we're diving into a deeply personal topic—Ehlers-Danlos Syndrome (EDS). Sherri first learned about EDS at just 16 years old, and today, she's sharing her journey of living with this complex connective tissue disorder. From early symptoms and diagnosis struggles to the daily challenges of chronic pain, joint instability, and fatigue, we'll discuss what it's really like to navigate life with EDS. New episodes are uploaded weekly on Saturday mornings at 7am Pacific / 10am Eastern Support us and the LeggLife Podcast by becoming a patron at ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠  / legglife  ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Learn more about LeggLife by following us on: YouTube: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠http://www.youtube.com/legglifeak/?su...⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Instagram: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠  / legglifeak  ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Facebook: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠  / legglife  ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ You can reach us via email at legglife@gmail.com

In this episode, Lindsey sits down with Michelle Miller, a service-driven storyteller and educator, a trauma-informed University Professor, an advocate for neurodiversity and autoimmune accommodations in education and entertainment, and a mentor who meets students and clients where they are. Tune in for a deeply nourishing conversation about self-acceptance, healing from trauma, neurodiversity and more!Ahead, Michelle shares her journey through neurodiversity, getting diagnosed with Ehlers-Danlos, and experiencing complex PTSD, describing how these experiences shaped her approach to life and teaching. Lindsey reflects on her own struggles with self-abandonment and neurodivergence.They also touch on the transformative power of artistic expression, the impact of social media on our nervous systems, and the significance of maintaining personal boundaries. Learn to embrace the beauty of your sacred and non-linear path with this gem of a convo!Morning Microdose is a podcast curated by Krista Williams and Lindsey Simcik, the hosts and founders of Almost 30, a global community, brand, and top rated podcast.With curated clips from the Almost 30 podcast, Morning Mircodose will set the tone for your day, so you can feel inspired through thought provoking conversations…all in digestible episodes that are less than 10 minutes.Wake up with Krista and Lindsey, both literally and spiritually, Monday-Friday.If you enjoyed this conversation, listen to the full episode on Spotify here and on Apple here.

Imagine facing a medical system that dismisses your symptoms and undermines your experiences. Our guest and dedicated advocate for patient empowerment, Anneke, reveals how she tackled this daunting challenge. Her remarkable journey from misdiagnoses such as chronic fatigue syndrome to finally understanding her rare chronic conditions, including adrenal insufficiency, lupus, and Ehlers-Danlos syndrome, exemplifies resilience. Anneke's story is not just about surviving but thriving, and it serves as a beacon of hope for anyone navigating the complexities of the healthcare system. Her book, "Recognize Me," offers a compelling insight into the life of someone living with fluctuating chronic conditions.We explore the nuanced challenges of medical gaslighting and the crucial role of empathetic healthcare providers who genuinely strive to listen and truly understand their patients. Anneke's experiences underscore the importance of self-advocacy and the transformative power of receiving a proper diagnosis and treatment. Her occupational therapy and health research background adds a unique perspective to her advocacy efforts, highlighting the intersection of personal experience and professional insight. The episode sheds light on the struggles many face with being misjudged by healthcare professionals and the ongoing effort to balance health challenges with familial responsibilities.The conversation delves into the human side of healthcare, stressing the significance of effective communication and trust between patients and doctors. We tackle the stigma of being labeled as "drug seekers" and the fears associated with transitioning to new healthcare providers. Anneke shares her encounters with medical practitioners who value collaboration and admit to uncertainties. Her insights remind us that patients should never feel ashamed of their symptoms, and despite chronic illness, a fulfilling life is within reach. This episode is a powerful testament to the resilience of the human spirit and the importance of defining personal happiness amidst health challenges.Welcome page to my website:  https://flyingthroughthewoods.weebly.com/Blog: https://flyingthroughthewoods.weebly.com/flyingthroughthewoodsPodcasts:https://flyingthroughthewoods.weebly.com/podcasts.htmlYouTube:https://www.youtube.com/channel/UCqcKATXhDJF_X05TGW0g3xwRecognise ME:https://www.amazon.com/Recognise-ME-documenting-journey-gaslighting/dp/1739259270?_encoding=UTF8&qid=&sr=Send us a text Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. Support the showSupport:https://rarepatientvoice.com/Myspooniesisters/https://www.etsy.com/shop/MySpoonieSistershttps://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)Website:https://myspooniesisters.com/

Carrie managed complications related to Ehlers Danlos Syndrome and POTS, severe joint pain, inflammation, chronic fatigue, and brain fog on a keto diet. Timestamps: 00:00 Trailer and introduction 03:39 Severe Ehlers-Danlos dislocations 07:11 Lack of holistic healthcare 11:23 Living with Ehlers-Danlos 13:09 Keto diet for POTS relief 18:15 Keto diet improved health 22:21 Carnivore diet Ehlers-Danlos relief 25:26 Relocating to Nicaragua 28:14 Research journey 32:52 Navigating diet and social norms 35:18 First experience eating meat 37:29 Managing Ehlers-Danlos with lifestyle adjustments 43:22 US prescription culture vs. rest of the world 46:35 Managing EDS through everyday ergonomics 48:47 Ehlers-Danlos improvement through lifestyle changes 52:18 Coping with parental loss Revero Clinic for treating chronic diseases: https://revero.com Join Revero Now to transform your health: https://revero.com/membership Join the Revero team (medical providers, etc): https://revero.com/jobs ‪#Revero #ReveroHealth #shawnbaker  #Carnivorediet #MeatHeals #AnimalBased #ZeroCarb #DietCoach  #FatAdapted #Carnivore #sugarfree Disclaimer: The content on this channel is not medical advice. Please consult your healthcare provider. ‪#revero #shawnbaker #Carnivorediet #MeatHeals #HealthCreation   #humanfood #AnimalBased #ZeroCarb #DietCoach  #FatAdapted #Carnivore #sugarfree  ‪

In our season one finale, we sit down with musician and actress Emily Ricks to hear her incredible journey of self-advocacy and healing. Emily had been diagnosed with Ehlers Danlos syndrome, colonic paralysis, MCAS, POTS, and more before finally finding an innovative treatment that changed her life. In this episode, she shares how she navigated biases in the healthcare system, trusted her intuition, and advocated for her own well-being -- all at only 18 years old. Emily's story is a testament to the power of persistence, resilience, and consistently taking the next right step.This is one of our favorite our episodes to date! That's a Wrap on Season One

Send us a textIn this powerful season finale, we sit down with musician and actress Emily Ricks to hear her incredible journey of self-advocacy and healing. Emily had been diagnosed with Ehlers Danlos syndrome, colonic paralysis, MCAS, POTS, and more before finally finding an innovative treatment that changed her life. In this episode, she shares how she navigated biases in the healthcare system, trusted her intuition, and advocated for her own well-being -- all at only 18 years old. Emily's story is a testament to the power of persistence, resilience, and taking the next right step. Wildfire Relief:Support World Central Kitchen's efforts to provide meals to first responders and families affected by the wildfires in Southern California. Help the Los Angeles Fire Department Foundation equip firefighters with vital tools and supplies.  Episode Links:Links for Emily RicksConnect with Us:Follow us on Instagram and Facebook for more insights and updates.Join our free Patreon community to leave a comment about this week's episode. Support the Show:If you enjoyed this episode, please share it with a friend or leave us a rating and review wherever you're listening—it's the easiest way to help others discover the podcast.We'd also love for you to join our Patreon. Free subscribers gain access to bonus content, personal updates, polls, and more. Support the show

Makiah from the US, shared her health journey, which began in childhood but became more noticeable after her second pregnancy. She experienced fatigue, gut issues, and abnormal postpartum recovery. After her third pregnancy, which was difficult and ended tragically with the loss of her son, she faced persistent health challenges, including bleeding, weight fluctuations, and fatigue. Seeking answers, she was diagnosed with endometriosis, adenomyosis, insulin-resistant PCOS, adrenal insufficiency, and gut dysbiosis. Despite following treatment protocols, she still experienced fatigue and food reactions, eventually discovering a potential link to Ehlers-Danlos syndrome (EDS) and mast cell activation syndrome.

Dr's J and Santhosh are almost back from their holiday break, and in the meantime we invite you to continue a tour through some of our classic and most requested episodes with guest hosts of days gone by!In this episode, Dr's J and Praz, with special guest Emily Hook discuss the attributes and health of circus sideshow performers. Along the way, they cover the history of circus sideshows, the Coney Island NICU, the classes of sideshow acts, Geeks, the secrets of human pincushions, glass chewing, sword swallowing, circus endoscopy and intubation, fire eaters lung ,off season care, Ehlers Danlos syndrome, acrobat anesthetists and more! So Step right up, sit back and relax as we dive into the world of freakshow!Sources1)http://www.bmj.com/content/333/7582/1285ijkey=8559399d0af3cd2596c8540d8872c966fa286536&keytype2=tf_ipsecsha2)http://time.com/3711869/sword-swallower-paris-1945/3)https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3522406/4)https://tinyurl.com/yxhpcon4   Supporting us monthly has all sorts of perks! You get ad free episodes, bonus musical parody, behind the scenes conversations not available to regular folks and more!! Your support helps us to pay for more guest interviews, better equipment, and behind the scenes people who know what they are doing! https://plus.acast.com/s/travelmedicinepodcast. Hosted on Acast. See acast.com/privacy for more information.

In this episode of the Brain & Life podcast, Dr. Katy Peters is joined by author, essayist, and speaker who “writes, thinks, and talks about disability” Jessica Slice. Jessica shares about her experiences as a disabled parent, what inspired her to write her books, and what hopes she has for the future. Dr. Peters is then joined by Dr. Svetlana Blitshteyn, Director and Founder of Dysautonomia Clinic and Clinical Associate Professor of Neurology at the University at Buffalo Jacobs School of Medicine and Biomedical Sciences. Dr. Blitshteyn explains exactly what Ehlers-Danlos, POTS, and Dysautonomia are, how diagnoses are made, and what treatment options look like.  We invite you to participate in our listener survey! By participating in the brief survey, you will have the opportunity to enter your name and email address for a chance to win one of five $100 Amazon gift cards.   Additional Resources Jessica Slice Understanding the Mysteries of POTS and Other Autonomic Disorders A Swimmer Returns to the Pool After Ehlers-Danlos Syndrome Diagnosis New Research May Help People with Long-Haul COVID-19 Dysautonomia Clinic   Other Brain & Life Episodes on Similar Topics Understanding Long COVID: What We Know How Paula Carozzo is Redefining Disability and Advocating for Her Community How Disability Advocate Wesley Hamilton Became Empowered by Adversity   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? ·       Record a voicemail at 612-928-6206 Email us at BLpodcast@brainandlife.org   Social Media:   Guests: Jessica Slice @jessicaslice; Dr. Svetlana Blitshtyen @dysclinic Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

Did you like the episode? Send me a text and let me know!!Embracing Neurodivergence: Entrepreneurial Journey with Joe PhillipsIn episode 96 of Undiscovered Entrepreneur on PodNation TV Network, host Skoob interviews Joe Phillips, a talented illustrator and surface pattern designer. Joe shares her inspiring journey from being medically retired from the London police due to burnout and Ehlers-Danlos syndrome, to thriving in her creative career. Diagnosed with autism, ADHD, and dyslexia, Joe found her passion for illustration and now runs a successful Etsy shop, Paperly UK. She also co-authored 'Beyond the Ordinary,' a book featuring stories of neurodivergent creatives. Joe discusses the importance of having a supportive community and the transformative power of a good coach. The episode dives into Joe's past accomplishments, future goals, and the role of neurodivergence in shaping her entrepreneurial path.00:00 Introduction and Announcements00:43 Meet Joe: From Police Officer to Illustrator02:29 Joe's Entrepreneurial Journey07:59 Challenges and Triumphs11:14 Advice for Aspiring Entrepreneurs25:08 Joe's Future Plans and Final Thoughts27:16 Wrap-Up and Key Takeaways Thank you for being a Skoobeliever!! If you have questions about the show or you want to be a guest please contact me at one of these social mediasTwitter......... ..@djskoob2021 Facebook.........Facebook.com/skoobamiInstagram..... instagram.com/uepodcast2021tiktok....... @djskoob2021Email............... Uepodcast2021@gmail.comIf you would like to be coached on your entrepreneurial adventure please email me at for a 2 hour free discovery call! This is a $700 free gift to my Skoobelievers!! Contact me Now!! On Twitter @doittodaycoachdoingittodaycoaching@gmailcom

Welcome to Real Food Recovery, a podcast created by two lifelong processed food addicts with over 100 years of addiction (and recovery) between them. Paige Alexander and Jamie Morgan Reno use their Real Food Recovery podcast and social media channels to share their struggles, lessons learned, tools, tips, and resources that freed them from decades of food addiction, obsession, and loss. Today we have the pleasure of chatting with Tim Kaufman, of Fat Man Rants. Tim was diagnosed with Ehlers-Danlos syndrome (EDS) in his early twenties. He was in chronic pain most of his life. By the time he had reached the age of 37 he was addicted to Fentanyl, alcohol, and fast food. At over 400 pounds he was unable to perform simple daily tasks. He had many chronic health issues and was almost immobile. He had lost his interest in life and had almost given up.Tim started a journey to regain his health. He started to change one small thing at a time. He is now an athlete who thrives on a plant-based whole-food lifestyle and leads a healthy, happy, productive, and very active life that is free of all medications he was once on. His passion is to spread the message that anyone can transition to a healthy, active lifestyle and dramatically change their life regardless of their current situation or size. You can find Tim's via his website, where you can learn more about his program and membership. He's also active on social media here, here and here. In every Real Food Recovery episode, Paige and Jamie take time to answer viewer questions about processed food addiction, obsession, and recovery, be sure to submit yours on their YouTube Channel or Facebook Page. You can also follow Real Food Recovery on Instagram (@realfoodrecovery4u), TikTok (@realfoodrecovery) or at www.realfoodrecovery4u.com.    

In this episode, Lindsey sits down with Michelle Miller, a service-driven storyteller and educator, a trauma-informed University Professor, an advocate for neurodiversity and autoimmune accommodations in education and entertainment, and a mentor who meets students and clients where they are. Tune in for a deeply nourishing conversation about self-acceptance, healing from trauma, neurodiversity and more! Ahead, Michelle shares her journey through neurodiversity, getting diagnosed with Ehlers-Danlos, and experiencing complex PTSD, describing how these experiences shaped her approach to life and teaching. Lindsey reflects on her own struggles with self-abandonment and neurodivergence. They also touch on the transformative power of artistic expression, the impact of social media on our nervous systems, and the significance of maintaining personal boundaries. Learn to embrace the beauty of your sacred and non-linear path with this gem of a convo! We also talk about: Techniques for resetting the vagus nerve  The addictive nature of phones + social media Embracing self-forgiveness as a pathway to success The impact of societal norms on individual authenticity Sensory processing challenges, ADHD, and neurodivergence The importance of personal boundaries + sacred choices The role of AI + technology in creativity Overcoming health struggles through self-awareness + self-care practices Resources: Instagram: @yourlittlebitofgood TikTok: @yourlittlebitofgood Facebook: Your Little Bit of Good YouTube: YourLittleBitofGood Sponsors: Fatty15 | Get an additional 15% off their 90-day subscription Starter Kit by going to fatty15.com/ALMOST30 and use code ALMOST30 at checkout. Lolavie | Get 15% off LolaVie with the code A30POD15 at https://www.lolavie.com/A30POD15.  Cymbiotika | Go to Cymbiotika.com/Almost30 and use code ALMOST30 for 20% off sitewide.  Birch Living | Get 25% off ALL mattresses and 2 free eco-rest pillows at birchliving.com/Almost30.  To advertise on our podcast, please reach out to sales@advertisecast.com or visit https://www.advertisecast.com/Almost30.  Learn More: almost30.com/learn almost30.com/morningmicrodose almost30.com/courses  Join our community:facebook.com/Almost30podcast/groups Podcast disclaimer can be found by visiting: almost30.com/disclaimer.  Find more to love at almost30.com! Almost 30 is edited by Garett Symes and Isabella Vaccaro. Learn more about your ad choices. Visit podcastchoices.com/adchoices

SummaryIn this conversation, Monica Michelle and Ann-Britt discuss their shared experiences with chronic illness, particularly Ehlers-Danlos syndrome. They explore the challenges of living with a chronic condition, the importance of community support, and the therapeutic role of music in coping with illness. Ann-Britt shares her journey from being an active musician to adapting her life around her health challenges, including the use of a wheelchair. They also touch on the differences in healthcare systems between Denmark and the USA, emphasizing the need for better understanding and support for those with chronic illnesses. In this conversation, Monica Michelle and Ann-Britt discuss the challenges of traveling with a disability, the emotional journey of adapting to life changes due to chronic illness, and the importance of setting boundaries. They explore generational differences in self-care, the concept of diminished normalcy, and the emotional ties to home. Ann-Britt shares her musical inspirations and the themes of her upcoming album, highlighting the beauty in small moments and the power of creativity in the face of adversity.Keywordschronic illness, Ehlers-Danlos syndrome, mental health, creativity, music therapy, wheelchair use, healthcare systems, Denmark, USA, community support, chronic illness, accessibility, self-care, personal growth, music, life changes, boundaries, emotional health, travel experiences, generational differences Hosted on Acast. See acast.com/privacy for more information.

Unfortunately, research on the lived-experience for those with Ehlers-Danlos Syndrome shows us that we as a profession need to be doing a better job.People with Ehlers-Danlos Syndrome report:A lack of reliable information for themselvesSocial stigma from peers.Lack of awareness of EDS in the healthcare communityAs occupational therapy professionals, there is much we can contribute to supporting this population. And, today we'll look at a self-management program that is grounded in behavior change theory and we co-designed with people with lived experience of EDS.Next week we will welcome to the podcast, an occupational therapist who has EDS and also treats EDS clients in her clinical practice, Emily Rich, PhD, OTR/L. Emily and I will discuss self-management, along with assessment and treatment of EDS.You can find more details on this course here:https://otpotential.com/ceu-podcast-courses/ot-and-ehlers-danlos-syndromeHere's the primary research we are discussing:Developing a self-management intervention to manage hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS): an analysis informed by behaviour change theory.Support the show

Dr. Kana Grace is a research psychologist, advocate, Specialist Mentor, and educator, specializing in the mental and physical health of neurodivergent people. Currently, Kana is an Honorary Research Fellow at the Centre for Research in Autism and Education (CRAE) at the Institute of Education, University College London (UCL), where she completed her PhD. Kana has lived experiences with autism, ADHD, dyslexia, Tourette syndrome, dyspraxia, hypermobility Ehlers-Danlos syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS).  She founded Valtameri (which means ocean in Finnish) to advocate for and support neurodivergent people and their families, based in Okinawa, Japan. Through Valtameri, she offers one-to-one support for neurodivergent people of all ages. She also gives talks and public lectures to deepen the understanding of neurodivergence in Okinawa Japan, and all over the world. Fluent in both English and Japanese, Kana bridges cultures in her extensive work.  During this episode, you will hear Kana talk about: How she discovered she is neurodivergent while at University What her life was like before she was diagnosed  Why she decided to focus her PhD on the study of loneliness in autistic adults The importance of involving autistic researchers in autism research  Her experience working in academia  Her observations about how autism and neurodivergence is viewed in Japan The goals she wants to achieve with her research Find out more about Kana and her work on her Linktree. Watch the video of this interview on YouTube. Read the episode transcript. Follow the Beyond 6 Seconds podcast in your favorite podcast player. Subscribe to the FREE Beyond 6 Seconds newsletter for early access to new episodes. Support or sponsor this podcast at BuyMeACoffee.com/Beyond6Seconds! *Disclaimer: The views, guidance, opinions, and thoughts expressed in Beyond 6 Seconds episodes are solely mine and/or those of my guests, and do not necessarily represent those of my employer or other organizations. These episodes are for informational purposes only and do not substitute for professional medical advice. Consult a medical professional or healthcare provider if you are seeking medical advice, diagnoses, or treatment.*

Molly Gibson is thriving once again after overcoming three debilitating illnesses.   In high school, her life was derailed by postural tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS), and mast cell activation syndrome (MCAS). She went from being a highly competitive athlete to completely bedridden.   After years of suffering, she began to eat a healthy plant-based diet and began to heal. The results were far more than she could have hoped for as her life returned to normal while her crippling symptoms vanished.   She has devoted her life to helping others and opened Rooted3, a plant-based restaurant in Bethesda, Md., that serves the same foods that helped her body heal.   Molly shares her never give up attitude and journey back to health with “The Weight Loss Champion” Chuck Carroll on The Exam Room podcast.   Topics Discussed - How a plant-based diet helped POTS, EDS, and MCAS - Living with chronic illnesses - Importance of positive outlook - And more — — SHOW LINKS — — Rooted3 Website: https://www.rooted3.com Instagram: http://instagram.com/rooted3foods Facebook: https://www.facebook.com/people/Rooted3/100094335491181 — — EVENTS — — Charlottesville VegFest Where: Charlottesville, VA Date: September 15 Tickets: http://www.veganrootsfest.org — — — Wellness Weekend Where: Davis, WV Date: September 27-28 Tickets: https://www.brendaworkmanspeaks.com/wellness-weekend — — — Power Foods Revolution Tour Where: New York City Date: October 5 Tickets: https://bit.ly/PowerFoodsNYC — — BECOME AN EXAM ROOM VIP — — Sign up: https://www.pcrm.org/examroomvip — — THIS IS US — — The Exam Room Podcast Instagram: https://www.instagram.com/theexamroompodcast — — — Chuck Carroll Instagram: https://www.instagram.com/ChuckCarrollWLC Facebook: http://wghtloss.cc/ChuckFacebook X: https://www.twitter.com/ChuckCarrollWLC — — — Physicians Committee Instagram: https://www.instagram.com/physicianscommittee Facebook: https://www.facebook.com/PCRM.org X: https://www.twitter.com/pcrm YouTube: https://www.youtube.com/user/PCRM Jobs: https://www.pcrm.org/careers — — SUBSCRIBE & SHARE — — 5-Star Success: Share Your Story Apple: https://apple.co/2JXBkpy​​ Spotify: https://spoti.fi/2pMLoY3 Please subscribe and give the show a 5-star rating on Apple Podcasts, Spotify, or many other podcast providers. Don't forget to share it with a friend for inspiration!