In this informative solo episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, dives into pressing topics impacting the hypermobility community. Learn about the new anesthesia time limit policy from Anthem Blue Cross (that was then reversed), how to manage Mast Cell Activation Syndrome (MCAS), understand food allergy testing, and find the best coaching options for those with complex conditions. Takeaways: New Anesthesia Policy Impacts EDS Patients: Anthem Blue Cross introduced time limits on anesthesia coverage, potentially shifting extra costs to patients if surgeries exceed these limits, making communication with providers essential. (This decision was then reversed after widespread public outcry demonstrating the importance of using our voices) MCAS Management is Personalized: Keeping a detailed symptom journal and identifying unique triggers are critical for managing mast cell activation syndrome effectively. Food Allergy Testing Limitations: Standard allergy tests may not reliably identify food triggers for those with MCAS, emphasizing the importance of symptom tracking and tailored elimination diets. Coaching vs. Medical Appointments: Coaching offers faster access and flexibility for guidance, but differs from medical services as it doesn’t include prescriptions or lab orders. Hypermobility Hacks for Surgery Prep: Stay informed about your insurance policies, maintain open communication with your healthcare team, and advocate for alternative payment or scheduling options if needed. Modifying Supplements for Surgery: Nutritional supplements that increase bleeding risk and/or interfere with medications used for anesthesia are discussed. 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/. Learn more about Human Content at http://www.human-content.com Podcast Advertising/Business Inquiries: sales@human-content.com YOUR bendy body is our highest priority! 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 Part of the Human Content Podcast Network

In this enlightening episode of the Bendy Bodies podcast, Dr. Linda Bluestein speaks with otolaryngologist Dr. Shu Das about the unique ENT challenges faced by people with Ehlers-Danlos Syndrome (EDS). Dr. Das shares his expertise on common issues like tonsil stones, chronic sore throats, and sinus infections, while diving deep into how EDS impacts vocal cords, nasal health, and even hearing. He offers practical tips for managing symptoms, from antibiotic courses to alternative surgical approaches. Packed with advice on avoiding unnecessary surgeries and improving overall quality of life, this episode is a must-listen for anyone navigating EDS and ENT-related issues. Takeaways: EDS Increases ENT Vulnerability: People with EDS are prone to ENT issues like tonsil stones, chronic sore throats, sinus infections, and vocal cord dysfunction due to their connective tissue laxity. Avoid Unnecessary ENT Surgeries: Surgery should be a last resort for EDS patients due to poor healing and higher complication risks. Alternatives like intracapsular tonsillectomy can minimize trauma when surgery is necessary. Antibiotic Treatment Requires Adjustment: EDS patients often need longer and earlier courses of antibiotics for sinus infections and other ENT issues to ensure full recovery. Hot Showers Are Healing: Heat and steam are beneficial for managing sinus issues, ear pain, and overall EDS symptoms, making hot showers a simple yet effective tool. Hot showers can be challenging for those with POTS and or MCAS, but for those who can tolerate them, they can be very helpful. Steroids Can Do More Harm Than Good: Intranasal steroids like Flonase should be avoided in EDS patients, as they weaken already fragile connective tissues, potentially exacerbating problems. 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/. Learn more about Human Content at http://www.human-content.com Podcast Advertising/Business Inquiries: sales@human-content.com YOUR bendy body is our highest priority! Learn about Dr. Das Website: https://www.usasinus.org/meet-dr-das 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 Part of the Human Content Podcast Network

In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein speaks with two brilliant young researchers, Jeevan Mann and Delaney Kenney, about their groundbreaking work in Ehlers-Danlos Syndromes (EDS). Jeevan shares insights into using 3D skin models for understanding hypermobile EDS, while Delaney discusses her biorepository project and the hope for future treatments. They also share personal experiences navigating life with chronic illness, the importance of advocating for accommodations, and the role of community in supporting those with EDS. This inspiring conversation highlights the innovative research that could transform EDS care and diagnosis. Takeaways: 3D Skin Models Transform Research: Jeevan explains how 3D skin equivalents provide a scalable and cost-effective way to study hypermobile EDS, enabling more replicates and faster results compared to mouse models. Hope for a Future Without EDS: Delaney highlights how working at the Gates Institute introduced her to the possibility of treatments that could manage or eliminate EDS symptoms in the future. Importance of Awareness: Both guests emphasize the need for broader education and awareness of EDS among medical professionals to reduce diagnosis delays and improve care. Advocacy Makes a Difference: Advocating for oneself and seeking accommodations, even when it’s difficult, can significantly improve the quality of life for those with chronic illnesses. Community Provides Strength: Connecting with others who share similar experiences, as well as learning from diverse approaches within the EDS community, fosters resilience and innovation. 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/. Learn more about Human Content at http://www.human-content.com Podcast Advertising/Business Inquiries: sales@human-content.com YOUR bendy body is our highest priority! Learn about Jeevan Mann and Delaney Kenney Instagram: @jeevanmann03 & @delaney_kenney 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 Part of the Human Content Podcast Network

Have you found a way to effectively communicate your symptoms to your doctor?

In this candid solo episode of the Bendy Bodies podcast, I share my insights into Mast Cell Activation Syndrome (MCAS) and its intricate connection to hypermobile Ehlers-Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS). Reflecting on my personal and professional perspective and cases from my practice, I discuss how MCAS may play a pivotal role in chronic pain and offer practical strategies for identifying and managing symptoms. From my first introduction to MCAS to groundbreaking results in patient care, this episode dives deep into the science and solutions for improving quality of life with these interconnected conditions. Stick around for special hypermobility hacks and helpful resources! Takeaways: MCAS as a Root Cause: Mast cell activation syndrome (MCAS) may be the underlying driver behind many symptoms experienced by individuals with hypermobile EDS (hEDS) and POTS, emphasizing the need for targeted treatment. A Spectrum of Symptoms: MCAS presents a wide variety of symptoms, from pain and fatigue to GI and neurological issues, making it essential to approach diagnosis and management comprehensively. Therapies Can Be Life-Changing: Tailored treatments for MCAS, such as antihistamines and mast cell stabilizers, can yield dramatic improvements in quality of life when appropriately managed. Patient Advocacy is Crucial: Self-advocacy and education are vital for navigating complex conditions like MCAS, hEDS, and POTS, especially when facing medical gaslighting or misdiagnosis. Sharing Information is Empowering: Podcasts, newsletters, and community platforms are invaluable for disseminating complex medical topics like MCAS, helping patients and providers alike understand these intricate conditions. Show Correction: I said “Mast cells respond to external stimuli but they actually respond to internal and external stimuli (hormones etc) 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/. Learn more about Human Content at http://www.human-content.com Podcast Advertising/Business Inquiries: sales@human-content.com YOUR bendy body is our highest priority! 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 Part of the Human Content Podcast Network