In today’s episode of @bendy_bodies, Isabel Ramirez-Burnett shares the emotional weight of living with a connective tissue disorder like Ehlers-Danlos Syndrome (EDS) and the added challenge of being told your symptoms are psychosomatic—by both doctors and family members. For many living with EDS, Hypermobility Spectrum Disorders (HSD), or ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), getting a diagnosis can take years. And while a diagnosis isn’t a cure, it can offer something powerful: validation. A name. A reason. Something to point to when your body doesn’t follow the rules—and no one believes you. 👇 Tell us: Did getting a diagnosis change how others treated you—or how you treated yourself? Share your story in the comments. #BendyBodies #EhlersDanlosSyndrome #EDS #HSD #MEcfs #ChronicFatigueSyndrome #ConnectiveTissueDisorder #InvisibleIllness #MedicalGaslighting #PsychosomaticMisdiagnosis #ChronicPain #DiagnosisMatters #ChronicIllnessAwareness #RareDisease #DisabilityAwareness #BendyBulletin #HypermobilitySyndrome #PatientAdvocacy #BelievePatients #HealthcareBias #ChronicFatigue #MentalHealthAndChronicIllness #BendyPodcast #LivingWithEDS 📌 Medical Advice Disclaimer: This information is for educational purposes only and is not a substitute for professional medical advice. Always consult your doctor before making any healthcare decisions.

What if your body’s collapse wasn’t burnout… but a system crash no test can catch? In this episode, Dr. Linda Bluestein welcomes Isabelle Ramirez Burnett, systems engineer, health coach, and founder of Renegade Research, to reveal the silent breakdowns behind ME/CFS, long COVID, and hypermobility-related illness. Diagnosed with ME/CFS at just 7 years old, Isabelle pulls back the curtain on decades of missed diagnoses, medical dismissal, and her discovery of a community willing to do what the healthcare system couldn’t—build their own science. You’ll hear about the remission that stunned researchers, the controversial meds that gave her life back, and the protocols patients are building from the ground up. If you’ve ever wondered why your body feels like it’s working against you—or what recovery might actually look like—this episode may change everything. 00:00 Introduction and Guest Introduction 01:53 Isabelle's Personal Journey with ME/CFS 06:07 Challenges in the US Healthcare System 15:08 Becoming an Advocate and Addressing Misconceptions 36:45 Understanding Patient Empowerment 41:07 Managing Symptoms with Medications 52:44 Self-Care Strategies for ME/CFS 56:03 Research and Advocacy for ME/CFS and Long COVID Takeaways: She couldn’t stand in front of the fridge—until a “taboo” medication changed everything. The labs were normal. Her body was screaming. A grandmother, a diagnosis, and an unstoppable fight for answers. What if your symptoms don't show up on any scan… but still hold the truth? The protocol that sparked a remission—and a global movement. Reference Links: RemissionBiome w/Dr. Yellman: https://www.youtube.com/watch?v=D-I8eRxAeZ4&ab_channel=RenegadeResearch https://pmc.ncbi.nlm.nih.gov/articles/PMC7831961/ 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! About Isabel Ramirez-Burnett : Twitter: https://x.com/isabelramirezrd?lang=en Renegade Research Twitter: https://x.com/renegaderes Youtube: https://www.youtube.com/remissionbiome LinkedIn: https://www.linkedin.com/isabelramirezrd BlueSky: https://isabelramirezrd.bsky.social Amazon: https://amzn.to/3EB7PcC Keep up to date with the HypermobilityMD: Shop my Amazon store https://www.amazon.com/shop/hypermobilitymd 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 FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links. **Disclaimer:** The content shared in this video is meant for general information only and is not intended as medical advice, diagnosis, or treatment. Always speak with a qualified healthcare provider regarding any questions you may have about a medical condition or treatment plan. The information presented here should not be used as a replacement for professional medical guidance. Any mentions of specific products are not intended to diagnose, treat, cure, or prevent any disease.

⚡ What if your patient wasn’t "just anxious" — but actually living with an undiagnosed connective tissue disorder? On today’s episode of @bendy_bodies, Dr. Audrey Kershaw shares how she approaches patients who show subtle (but serious) signs of conditions like Ehlers-Danlos Syndromes (EDS) or HSD, mast cell activation syndrome (MCAS), or postural orthostatic tachycardia syndrome (POTS). Instead of dismissing symptoms like failed anesthesia, easy bruising, or extreme appointment anxiety, she listens differently — and starts connecting the dots others have missed. 🧩 Spotting these signs early can change a patient's entire life. Because when you know what to look for, you can finally give patients the answers they've been searching for. 🎧 Listen to the full episode wherever you get your podcasts! #BendyBodies #EDS #MCAS #POTS #Hypermobility #HSD #ChronicIllnessAwareness #InvisibleIllness #ConnectiveTissueDisorders #PatientAdvocacy #DentalCare #Dentistry #Hypermobile #ChronicPain #MedicalAdvocacy #HealthcareProfessionals #ListenToPatients 📌 Medical Advice Disclaimer: This information is for educational purposes only and is not a substitute for professional medical advice. Always consult your doctor before making any healthcare decisions.

What if your dental history held the key to a complex diagnosis no one’s caught? In this gripping episode of the Bendy Bodies Podcast, Dr. Linda Bluestein welcomes Dr. Audrey Kershaw, a trailblazing oral surgeon who’s uncovered hundreds of hidden Ehlers-Danlos Syndrome (EDS) cases—starting in the dental chair. From patients who “can’t numb up,” to decades-long battles with halitosis, gum fragility, and jaw instability, Dr. Kershaw shares the subtle (and sometimes shocking) signs that suggest something far deeper is at play. Together, they explore what happens when TMD, failed anesthesia, slow healing, and even bad breath point to connective tissue disorders that most dentists never learn about. If your mouth has always felt... different—this episode might explain why. Takeaways: Some patients can’t numb up… and the reason may change how you see your entire body. Your wisdom tooth extraction might’ve revealed more than just a dental issue. That persistent jaw pain? It may be pointing to something systemic. A 40-year case of bad breath led to an unexpected diagnosis—here’s what happened. You might be able to spot a connective tissue disorder… before a dentist even says a word. Reference Links: GIRFT RCS TMD full document. https://www.rcseng.ac.uk/-/media/FDS/Comprehensive-guideline-Management-of-painful-Temporomandibular-disorder-in-adults-March-2024.pdf GITFT RCS TMD patient summary document. https://www.rcseng.ac.uk/-/media/FDS/TMD-Patient-support-document-March-2024.pdf GIRFT RCS TMD Clinician summary document https://www.rcseng.ac.uk/-/media/FDS/TMD-Clinician-summary-document-March-2024.pdf Scottish Dental Magazine article EDS Article https://oralsurgeryscotland-my.sharepoint.com/personal/hello_oralsurgery_scot/_layouts/15/onedrive.aspx BISOM link to mouth ulcers https://bisom.org.uk/wp-content/uploads/2020/02/RAS-PIL-October-2019.pdf LA paper 2019 https://pmc.ncbi.nlm.nih.gov/articles/PMC6834718/ Link to pt EDS email EDS PATIENT EMAIL April 2025.docx Link to "Perioperative Management of Patients with Ehlers-Danlos Syndromes" by Drs. Chopra and Bluestein https://www.scirp.org/journal/paperinformation?paperid=97524 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! Learn about Dr. Audrey Kershaw: Website: https://www.oralsurgery.scot/ Keep up to date with the HypermobilityMD: Shop my Amazon store https://www.amazon.com/shop/hypermobilitymd 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 FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links. **Disclaimer:** The content shared in this video is meant for general information only and is not intended as medical advice, diagnosis, or treatment. Always speak with a qualified healthcare provider regarding any questions you may have about a medical condition or treatment plan. The information presented here should not be used as a replacement for professional medical guidance. Any mentions of specific products are not intended to diagnose, treat, cure, or prevent any disease.

🌍 Did you know there’s a growing conversation around the link between hypermobile Ehlers-Danlos syndrome (hEDS) and transgender or gender-diverse identities? Recent research suggests that neurodivergence (especially autism and ADHD), connective tissue disorders [like EDS and hypermobility spectrum disorders (HSD)], and gender diversity may intersect in fascinating ways. What are your thoughts on this topic? Have you noticed these connections in your own experience? Drop a comment below! ⬇️ #HypermobileEDS #hEDS #EhlersDanlosSyndrome #TransHealth #GenderDiversity #LGBTQHealth #Neurodiversity #MCAS #ConnectiveTissueDisorders #ChronicIllness #MedicalResearch #InclusiveHealthcare 📌 Medical Advice Disclaimer: This information is for educational purposes only and is not a substitute for professional medical advice. Always consult your doctor before making any healthcare decisions.

What if the very things you do to feel or look better are quietly making you feel worse? In this solo episode of the Bendy Bodies Podcast, Dr. Linda Bluestein answers listener questions—but what begins as a practical Q&A quickly dives into rarely discussed truths about cosmetic procedures, EMFs, neuroinflammation, and even fragrances as dangerous triggers. You’ll hear surprising stories from patients who’ve suffered unexpected complications—and discover how seemingly harmless habits, like party tricks or perfume, could be tipping the scale toward long-term damage. Plus, Dr. Bluestein unpacks the case for renaming MCAS, the underrecognized connection between transness and hypermobility, and why your surgeon might not be as EDS-aware as they claim. If you think you’ve already heard it all about EDS (Ehlers-Danlos Syndromes), HSD (Hypermobility Spectrum Disorders), MCAS (Mast Cell Activation Syndrome), and chronic illness—you haven’t heard this. Takeaways: You might be surprised to learn which test isn’t as useful for diagnosing MCAS as people think. The brain fog you're feeling? There's a cellular player involved—and it's not just inflammation. Some reactions you're calling “allergies” might be something very different (and trickier to detect). The way mast cells interact with the brain could change how we think about neurodevelopment. A few supplements could help—but only if you're asking the right questions first. Chapters: 00:00 Introduction and Welcome 01:17 Testosterone Therapy Insights 05:56 Cosmetic Treatments and EDS 12:41 Raynaud's Syndrome and Small Fiber Neuropathy 18:16 Transness and Hypermobility 21:35 Mast Cell Activation Spectrum 25:17 Fragrances, EMFs, and Party Tricks 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! LinkedIn: https://www.linkedin.com/in/theoharis-theoharides-ms-phd-md-faaaai-67123735 Keep up to date with the HypermobilityMD: Shop my Amazon store https://www.amazon.com/shop/hypermobilitymd 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 FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links. **Disclaimer:** The content shared in this video is meant for general information only and is not intended as medical advice, diagnosis, or treatment. Always speak with a qualified healthcare provider regarding any questions you may have about a medical condition or treatment plan. The information presented here should not be used as a replacement for professional medical guidance. Any mentions of specific products are not intended to diagnose, treat, cure, or prevent any disease.

On today’s episode of @bendy_bodies, therapist couple Melissa Dickinson and Tom Query get real about what it takes to build a strong, successful relationship while living with EDS (Ehlers-Danlos Syndrome) and neurodivergence. 💬💕 From open communication to adapting daily life, they share the tools that help them stay connected—and the power of naming (and cursing!) the unwelcome third wheel in their relationship: “Ed.” 😤 "Miscoding" each other happens commonly when someone is neurodivergent and solutions can be elusive. Don't miss this episode if you are struggling with HSD, EDS and/or neurodivergence (e.g.: autism, ADHD, dyslexia, dyspraxia, Tourettes, etc). What have you found most challenging regarding relationships with your illness(es)?👀 #BendyBodiesPodcast #EDS #NeurodivergentLove #Hypermobility #RelationshipGoals #ChronicIllnessSupport #EhlersDanlosSyndrome #InvisibleIllness #CouplesAndChronicIllness #BendyBodies #DrLindaBluestein #MCAS #PatientAdvocacy #ChronicLove 📌 Medical Advice Disclaimer: This information is for educational purposes only and is not a substitute for professional medical advice. Always consult your healthcare provider before making any medical decisions.

✅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. Chapters: 00:00 Introduction and Guest Background 02:53 Melissa's Health Journey and Relationship Dynamics 06:30 Caregiving Challenges and Support Systems 24:06 Intimacy and Communication in Relationships 36:48 Humor and Misunderstandings 37:43 Challenges and Rewards of Caregiving 40:33 Balancing Needs and Self-Care 48:01 Neurodivergence and Relationship Dynamics ✅ Check out other videos for the newly diagnosed https://www.youtube.com/playlist?list=PLX9StmpQKW30xe6ObyIbbVDQaLpD9J6cI 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! 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: Shop my Amazon store https://www.amazon.com/shop/hypermobilitymd 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 FTC: This video is not sponsored. Links are commissionable, meaning I may earn commission from purchases made through links. **Disclaimer:** The content shared in this video is meant for general information only and is not intended as medical advice, diagnosis, or treatment. Always speak with a qualified healthcare provider regarding any questions you may have about a medical condition or treatment plan. The information presented here should not be used as a replacement for professional medical guidance. Any mentions of specific products are not intended to diagnose, treat, cure, or prevent any disease.