Avsnitt
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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/.
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YOUR bendy body is our highest priority!
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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/.
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YOUR bendy body is our highest priority!
Learn about Dr. Das
Website: https://www.usasinus.org/meet-dr-das
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Saknas det avsnitt?
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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
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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
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Blog: hypermobilitymd.com/blog
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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
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YOUR bendy body is our highest priority!
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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, welcomes Chicago-based physical therapist Wendy Wagner to discuss the unique challenges of physical therapy for hypermobility and Ehlers-Danlos Syndrome (EDS). Wendy, who personally manages EDS, postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS), shares her journey, insights on cervical instability, and tips for choosing the right physical therapist. They dive into the importance of “starting low and going slow” in exercise, strategies for avoiding flares, and how to tailor physical therapy to individual needs. Whether you’re looking to build strength or simply move without pain, Wendy’s expertise provides guidance and practical hacks to make physical therapy safer and more effective for hypermobile bodies.
Takeaways:
Physical Therapy Requires Customization: Traditional PT often doesn’t suit hypermobile patients, who benefit more from individualized programs that focus on stability and gradual strength-building.
Start Low, Go Slow: Many patients with EDS need to begin with very small movements to avoid overloading their joints and worsening pain or instability.
Building Confidence is Essential: Overcoming kinesiophobia (fear of movement) is key for hypermobile patients, often requiring exercises that first build trust in their bodies.
Mindfulness and Body Awareness Matter: Breathing exercises, body awareness, and even posture adjustments can help patients avoid compensatory movements and pain.
Collaboration is Key in PT: Finding a PT willing to learn and work collaboratively is crucial for hypermobile patients to safely navigate physical therapy.
Connect with YOUR Bendy 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/.
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YOUR bendy body is our highest priority!
Learn about Wendy Wagner
Facebook: https://www.facebook.com/wendy4therapy
Website: https://www.wendy4therapy.com/
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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, explores the impact of nutrition on joint hypermobility with Lorna Ryan, chair of the Diet and Nutrition Working Group for the Ehlers Danlos Society. Lorna shares essential advice on how to nourish the body for better pain management, improved gut health, and more energy. From the importance of fiber to balancing nutrients and understanding food sensitivities, this conversation is packed with practical tips. Lorna also shares her favorite recipes and explains how the right foods can help reduce EDS (Ehlers-Danlos Syndrome) symptoms and support gut health. Whether you’re looking to ease GI symptoms, balance energy levels, or discover new dietary approaches for EDS, this episode offers valuable insights and hacks.
Takeaways:
Flexible Diets Work Best: There is no one-size-fits-all diet for EDS; flexible eating plans based on individual needs are more effective than rigid restrictions.
Fiber is Crucial for Gut Health: Fiber is essential for a healthy gut, and those with EDS often need to reintroduce it gradually to avoid GI symptoms.
Adaptability is Key in Nutrition: Lorna emphasizes adapting diets based on changing symptoms, seasons, and life circumstances, helping to better manage health outcomes.
Food as Nourishment, Not Restriction: Instead of focusing on restrictions, Lorna advises seeing food as a source of nourishment that supports healing and strength.
Track, Don’t Restrict: Keeping a food and symptom diary helps identify triggers without unnecessary restrictions, especially for those managing mast cell activation syndrome and dysautonomia.
Connect with YOUR Bendy 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/.
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YOUR bendy body is our highest priority!
Learn about Lorna Ryan
Instagram: https://www.instagram.com/lornaryanhealth
Diet and Nutrition Summit Information
Recordings Package ($30) – The Recordings Package ticket will become available after sale of the Virtual Ticket ends, those who purchase will receive access to the on-demand content from November 3. It does not include access to the live event or our event app Whova, and will be available for 8 weeks after the event airs.
Choose Your Price Access – After sale of the Recordings Package ticket ends, those who would like to access the on-demand content can purchase it on a “Choose Your Price” basis, where they are able to opt-out and access without a cost if they wish.
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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, has an in-depth conversation with Dr. Clair Francomano, a leading expert on connective tissue disorders and Chair of the Medical and Scientific Advisory Board for the Ehlers-Danlos Society. Dr. Francomano shares her insights on diagnosing hypermobile Ehlers-Danlos Syndrome (hEDS) versus hypermobility spectrum disorders (HSD), the current state of genetic testing, and emerging biomarkers (are we close?) that could revolutionize hEDS diagnosis. She discusses the potential connections between EDS, mast cell activation syndrome (MCAS), and postural orthostatic tachycardia syndrome (POTS), offering advice for patients navigating this complex landscape. With updates from ongoing research, this episode is essential listening for those with EDS or related conditions.
Takeaways:
Differences Between hEDS and HSD: Dr. Francomano explains the nuanced distinctions between hypermobile EDS (hEDS) and hypermobility spectrum disorders (HSD), noting that these categories may overlap more than previously thought and might benefit from unified diagnostic criteria in the future.
Genetic Testing Red Flags: While genetic testing can be useful, Dr. Francomano highlights specific “red flags” in family history or personal health that should prompt a referral to a geneticist for further investigation.
Current Limitations of Genetic Testing for hEDS: Unlike other types of EDS, hEDS currently has no identified genetic markers, meaning diagnosis relies on clinical criteria rather than genetic testing alone.
Emerging Biomarkers Show Promise: New studies, such as those exploring fibronectin and calocrine, suggest potential biomarkers for hEDS and HSD, which could transform diagnosis and treatment in the future.
Holistic Approach to Comorbidities: Dr. Francomano discusses how hEDS often presents with comorbidities like POTS and mast cell activation syndrome, recommending a comprehensive, multidisciplinary approach to manage these interconnected symptoms effectively.
Connect with YOUR Bendy 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/.
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YOUR bendy body is our highest priority!
Learn about Dr. Clair Francomano
Her Book: https://amzn.to/4e3eSaF
Instagram: @dr.clairfrancomano
Youtube: @DoctorClair
Red Flags List: https://www.bendybodiespodcast.com/p/redflags/
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In this personal solo episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, opens up about her journey from aspiring ballet dancer to renowned hypermobility expert. Dr. Bluestein shares her struggles with joint pain, dislocations, and chronic illness, which led to her diagnosis of Ehlers-Danlos Syndrome (EDS). Along with her personal story, Dr. Bluestein reveals the hacks and strategies that have helped her regain function, manage pain, and improve her quality of life. From practical tips to movement strategies, this episode is packed with advice on navigating hypermobility and chronic pain. Whether you’re newly diagnosed or a long-time EDS warrior, you’ll find plenty of insights and hacks to apply to your own journey.
Takeaways:
Personal Struggles Led to Professional Focus: Dr. Bluestein's own experiences with chronic pain, multiple surgeries, and hypermobility drove her to shift from being an anesthesiologist to becoming a hypermobility expert and advocate.
Hypermobility Affects Multiple Body Systems: Dr. Bluestein's journey highlights how hypermobility and Ehlers-Danlos Syndrome (EDS) can impact various systems in the body, including joints, gastrointestinal issues, and the nervous system.
Tarlov Cyst Surgery Was a Turning Point: Dr. Bluestein's diagnosis of a Tarlov cyst and subsequent surgery gave her tremendous relief after years of pain, sparking her commitment to helping others with similar conditions.
Movement is Critical for Recovery: Despite the fear of injury, Dr. Bluestein emphasizes the importance of movement for those with EDS, as it is essential for maintaining strength and preventing further dysfunction.
Secrets to Living Better: Dr. Bluestein shares the approach she used to improve her own quality of life. This holistic method to help patients manage EDS and chronic pain includes movement, nutrition, psychosocial support, nutritional supplements, and medication.
Connect with YOUR Bendy 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/.
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YOUR bendy body is our highest priority!
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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, reconnects with her neurosurgeon, Dr. Frank Feigenbaum, who performed her Tarlov cyst surgery in 2011. Dr. Feigenbaum, a leading expert in Tarlov cyst treatment, shares the complexities of diagnosing these cysts, how they affect the nerves, and the groundbreaking surgical techniques he developed. Dr. Bluestein reflects on her personal journey through surgery and recovery, providing listeners with a unique patient-surgeon perspective. Tune in to learn about Tarlov cyst symptoms, diagnostic challenges, and how surgery can restore quality of life.
Takeaways:
Tarlov Cysts Can Be Symptomatic: While often dismissed as asymptomatic, Tarlov cysts can cause severe pain and neurological symptoms by compressing surrounding nerves.
Selective Nerve Blocks Are Key for Diagnosis: To confirm that Tarlov cysts are the source of symptoms, selective nerve blocks can help diagnose and plan surgical interventions.
Surgery Is a Lasting Solution: Dr. Feigenbaum’s unique surgical approach, involving draining and wrapping the cysts, has shown long-term success with no cyst recurrence at the treated sites.
Recovery Takes Time: Nerve healing after surgery can take weeks, months, or even years. Patience is key, as symptoms may improve gradually.
The Least Invasive Approach Wins: Dr. Feigenbaum emphasizes doing as little as possible to the cysts during surgery to reduce nerve damage, offering the best chances for recovery.
Connect with YOUR Bendy 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
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YOUR bendy body is our highest priority!
Learn about Dr. Frank Feigenbaum:
Website: https://www.frankfeigenbaum.com
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In this inspiring episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, interviews Adji Cissoko, principal dancer with the Lines Ballet Company. Adji shares her incredible journey of balancing natural flexibility with the strength needed to thrive in professional ballet. From dealing with injuries to discussing the importance of sleep, nutrition, and cross-training, Adji provides a glimpse into the discipline required to succeed in dance while taking care of her body. Listeners will learn valuable lessons on injury prevention, building strength, and listening to your body, straight from one of the most captivating dancers in the world.
Takeaways:
Strength is Essential: While flexibility came naturally to Adji, she quickly learned that building strength is crucial for controlling movement, especially in ballet. Strength allows dancers to safely showcase their flexibility without risking injury.
Listening to Your Body: Adji emphasized the importance of tuning into your body to understand when to push through fatigue and when to rest, striking the right balance to avoid injury while still progressing.
Sleep and Recovery Matter: Adji prioritizes sleep, often getting 9 to 10 hours per night, to allow her body to recover and stay resilient, particularly in demanding environments like high-altitude performances.
Cross-Training for Dance Longevity: To maintain balance and strength, Adji incorporates Pilates, gyrotonics, and strength training into her routine, allowing her to stay in peak condition and mitigating injury risks.
Flexibility Doesn’t Equal Strength: Adji learned early on that flexibility alone isn’t enough for successful dancing—building core and muscle strength is key to controlling movements and maintaining beautiful lines.
Connect with YOUR Bendy 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/.
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YOUR bendy body is our highest priority!
Learn about Adji Cissoko:
Instagram: @adji_cissoko
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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, sits down with physical therapist and yoga expert Lara Heimann to uncover the hidden dangers of yoga for hypermobile individuals. As the creator of the LYT Method, Lara combines yoga with functional anatomy to ensure that movement is safe and effective for those with joint instability. Lara shares why traditional yoga practices may be putting hypermobile people at risk and offers crucial advice on how to avoid injury, build strength, and prioritize stability. Don’t miss this eye-opening discussion on how to practice yoga safely with hypermobility.
Takeaways:
Yoga for Hypermobile People: Hypermobile individuals can benefit from yoga if they focus on stability and avoid pushing into extreme ranges of motion.
Stability Over Flexibility: Building strength and stability should be prioritized over achieving deep flexibility in yoga practice.
Body Awareness is Key: Proprioception and awareness of body position are essential for safe movement in yoga for hypermobile individuals.
Props and Feedback: Using blocks, the wall, and other props can help provide feedback and enhance stability during practice.
Finding the Right Instructor: It's crucial to find a yoga teacher who understands the unique needs of hypermobile individuals and emphasizes stability over flexibility
Connect with YOUR Bendy 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: [email protected]
YOUR bendy body is our highest priority!
Learn about Lara Heimann:
Instagram: @lara.heimann
Facebook: @lara.f.heimann
Youtube: @LYTMethod
Keep up to date with the HypermobilityMD:
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Blog: hypermobilitymd.com/blog
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In this special on-site episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, sits down face to face with Dr. John Pitts! Dr. Pitts, is an expert in regenerative medicine, about cutting-edge treatments for hypermobility and chronic pain. Dr. Pitts discusses prolotherapy, protein rich plasma (PRP), and "stem cell" therapies and explains how these treatments can heal tissues and improve function without surgery. He shares insights on treating conditions like Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorder (HSD), and joint instability, focusing on helping the body heal itself. Whether you’re dealing with nagging pain or seeking alternatives to surgery, this episode offers hope and practical solutions.
Takeaways:
Regenerative Medicine: Prolotherapy, PRP, and "stem cells" can help heal tissues and reduce pain by stimulating the body’s natural healing processes.
Early Treatment: Early intervention in hypermobile joints can prevent long-term damage and the need for surgery.
Safer Alternatives to Surgery: Injection-based treatments offer a less invasive and safer alternative to orthopedic surgery.
PRP and Stem Cell Evidence: These treatments have been shown to improve outcomes for knee arthritis and other musculoskeletal issues.
Tailored Approaches for EDS Patients: Patients with Ehlers-Danlos Syndrome may respond better to prolotherapy and require different treatment approaches compared to non-EDS patients.
Connect with YOUR Bendy 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
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YOUR bendy body is our highest priority!
Learn about Dr. John Pitts:
IG: @johnpittsmd & @centenoschultzclinic
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In this enlightening episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, is joined by renowned clinical geneticist Dr. Paldeep Atwal to delve into the complexities of genetics in hypermobile Ehlers-Danlos Syndrome (hEDS) and related conditions. Dr. Atwal explains the importance of genetic testing, the significance of variants of uncertain significance (VUSs), and the complexities of gene interactions in understanding EDS. They also explore the future of genetic research and what patients should know about genetic testing to avoid misinformation and unnecessary stress. Whether you're new to the world of EDS or looking for cutting-edge insights, this episode offers valuable guidance.
Takeaways:
Importance of Genetic Testing: Genetic testing can reveal rare types of Ehlers-Danlos Syndromes (EDS), even when hypermobile EDS is suspected.
Understanding Genetic Variants: Variants of uncertain significance can lead to confusion, making expert interpretation crucial for proper diagnosis.
Gene-Environment Interactions: Genetic variants do not work in isolation—gene-gene and gene-environment interactions play a significant role in how conditions manifest.
Complexity of Genetics in EDS: The absence of a genetic marker for hypermobile EDS highlights the need for continued research into the genetic basis of the condition.
Avoiding Direct-to-Consumer Pitfalls: Be cautious with direct-to-consumer genetic testing, as inaccurate results can cause unnecessary stress. Always consult a geneticist for interpretation.
Connect with YOUR Bendy 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
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YOUR bendy body is our highest priority!
Learn about Dr. Paldeep Atwal
Website: https://atwalclinic.com/
IG / X / FB : @atwalclinic
Youtube: https://www.youtube.com/channel/UCffZDBcvf-vFRsT7k9GppTQ
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Blog: hypermobilitymd.com/blog
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In this unique solo episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, answers listener-submitted questions about hypermobile Ehlers-Danlos syndrome (hEDS), POTS, and related conditions. From understanding the importance of a correct diagnosis to tips for managing symptoms, Dr. Bluestein offers valuable insights on living with chronic illness. Learn what to ask your doctor, how to pace yourself with hEDS and POTS, and discover Dr. Bluestein’s favorite hypermobility hacks. Whether you’re newly diagnosed or have been managing symptoms for years, this episode provides practical advice for navigating the complexities of hypermobility.
Takeaways:
Diagnosis Matters: A correct diagnosis can provide validation and guide more effective treatment strategies.
Pacing with POTS: Learning to listen to your body and finding the right balance between activity and rest is crucial in managing POTS and EDS.
Doctor-Patient Communication: Organize and report symptoms clearly to your doctor to improve diagnosis and treatment.
Importance of Empathy: Finding a healthcare provider who shows empathy and is willing to learn about EDS can make all the difference.
Hypermobile Hacks: Simple strategies, like journaling symptoms and gradual movement, can help manage hypermobility-related pain.
Connect with YOUR Bendy 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
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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
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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, welcomes Dr. Alan Hakim, a world-renowned rheumatologist and expert in Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD). Dr. Hakim reveals for the first time something about his own health. Listen in to find out what Dr. Hakim really thinks about the Beighton Score and the 2017 hEDS Classification Criteria. He also shares when he feels genetic testing is indicated and how to interpret variants of uncertain significance (VUSs).
Takeaways:
Difference Between Connective Tissue Disorders: Dr. Hakim clarifies the difference between hereditary connective tissue disorders like EDS and autoimmune connective tissue disorders such as lupus and rheumatoid arthritis.
Evolving EDS Criteria: The 2017 classification of EDS has improved the understanding of conditions like hypermobile EDS, but there’s still ongoing research and work being done to refine the criteria. Dr. Hakim shares his thoughts on the criteria and the process.
Comorbidities in EDS and HSD: Conditions such as POTS (Postural Orthostatic Tachycardia Syndrome) and GI disorders often accompany hypermobility-related disorders, though more research is needed to establish how these comorbidities are connected.
The Importance of Instability: Joint instability, rather than just hypermobility, may play a more significant role in patient symptoms, making proper diagnosis and treatment plans essential.
Future of Genetic Testing: While genetic markers for hypermobile EDS have not yet been identified, significant research is underway to find biomarkers and better understand the genetic components of these disorders. Dr. Hakim shares his thoughts on when genetic testing should be performed and covers red flags for more rare types of EDS and other hereditary connective tissue disorders.
Connect with YOUR Bendy 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
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YOUR bendy body is our highest priority!
Learn about Dr. Alan Hakim:
Instagram: @ehlers.danlos
Keep up to date with the HypermobilityMD:
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Twitter: twitter.com/BluesteinLinda
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Blog: hypermobilitymd.com/blog
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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, welcomes Dr. Tina Wang, a leading expert in physical medicine, rehabilitation, and fascia research. Dr. Wang delves into the complexities of fascia, particularly its role in Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD). She explains how fascial dysfunction contributes to myofascial pain, joint instability, and other challenges faced by individuals with hypermobility. Dr. Wang also discusses innovative diagnostic techniques and treatment approaches, including the use of ultrasound and manual therapy. This episode is a must-listen for anyone who wants to better understand their pain, or is interested in the cutting-edge research and clinical insights on fascia and connective tissue disorders.
Takeaways:
Fascia’s Role in EDS: Fascia plays a crucial role in connective tissue disorders like EDS and HSD, impacting everything from joint stability to chronic pain.
Myofascial Pain: Myofascial pain, often misunderstood, can be a significant source of discomfort in hypermobility conditions due to fascial dysfunction.
Ultrasound for Diagnosis: Advanced ultrasound techniques are improving the ability to diagnose fascial changes and guide treatment in EDS patients.
Manual Therapy Benefits: Proper manual therapy can help alleviate fascial dysfunction, but it must be approached cautiously, especially in hypermobile patients.
Holistic Management: Managing hypermobility-related pain requires a holistic approach, including movement therapy, manual therapy, and collaboration with healthcare professionals.
Connect with YOUR Bendy 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
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YOUR bendy body is our highest priority!
Learn about Dr. Tina Wang:
Linkedin: @tupelopointe
Tiktok: @tupelopointe
Keep up to date with the HypermobilityMD:
YouTube: youtube.com/@bendybodiespodcast
Twitter: twitter.com/BluesteinLinda
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Facebook: facebook.com/BendyBodiesPodcast
Blog: hypermobilitymd.com/blog
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Each week, join Dr. Linda Bluestein (AKA The Hypermobility MD) on her quest to demystify the wide world of symptomatic joint hypermobility. Get ready to better understand your own bendy body in our newest season – available now!
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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, chats with Katie and Andrew Dettelbach, founders of Whealth, a program dedicated to helping people with hypermobility and chronic pain. Both Katie and Andrew have hypermobile Ehlers-Danlos Syndrome (hEDS) and have turned their personal struggles into a platform that empowers others to manage their pain and regain strength. Katie, a critical care nurse, and Andrew, a kinesiologist, discuss their journeys, challenges with hypermobility, and the innovative methods they’ve developed to help thousands worldwide overcome chronic pain. Learn how movement, strength, and understanding your body can transform your life.
Takeaways:
Movement and Hypermobility: Finding the right type of movement is crucial for managing hypermobility and chronic pain, though it may take trial and error.
Strength Training and Pain Relief: Tailored strength training can significantly reduce pain and improve function in hypermobile bodies.
Listening to the Body: It’s essential to distinguish between good and bad pain, adjusting your activities accordingly.
Holistic Approach: Programs like Whealth emphasize not just movement but also nutrition, stress management, and environment for better overall health.
Self-Compassion: Managing chronic conditions requires patience and self-compassion, recognizing that healing and strength-building is a journey.
Connect with YOUR Bendy 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
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YOUR bendy body is our highest priority!
Learn about Whealth Founders Katie & Andrew Dettelbach:
X / Twitter: @spreadwhealth
Instagram: @whealth
Facebook: @spreadwhealth
Youtube: @whealth
Tiktok: @whealth_
Andrew IG: @the.shirtlessdude
Keep up to date with the HypermobilityMD:
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Blog: hypermobilitymd.com/blog
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In this insightful episode of the Bendy Bodies podcast, Dr. Linda Bluestein speaks with Dr. Natasha Trujillo, a licensed sports psychologist specializing in grief, loss, and chronic illness. Dr. Trujillo and Dr. Bluestien both work with the Colorado Ballet. Dr. Trujillo discusses the complex emotional landscape of grieving when faced with chronic pain, disability, and the loss of identity. She shares valuable strategies for processing grief, moving towards acceptance, and navigating self-compassion. Whether you’ve experienced grief from illness, injury, or significant life changes, this episode provides tools and approaches to living a fuller, more resilient life.
Takeaways:
Grief Beyond Death: Grief can occur after any significant loss, not just death, especially when living with chronic illness and disability.
Acceptance and Resilience: Acceptance is not about giving up; it’s about acknowledging reality while continuing to strive for personal growth and well-being.
Grief is Nonlinear: The stages of grief do not always follow a predictable order and can vary widely from person to person.
Processing Emotions: Identifying, expressing, and working through emotions are key steps in moving through grief and loss.
Self-Compassion: Developing self-compassion is crucial when dealing with grief and loss, as it helps counteract self-blame and fosters emotional healing.
Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.
This episode is sponsored by EDS Guardians. If you want to learn more, check them out here: https://www.edsguardians.org/
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/.
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YOUR bendy body is our highest priority! 🧬🔬🦓
Learn about Dr. Natasha Trujillo:
Instagram: @npttherapy
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
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In this episode of the Bendy Bodies podcast, Dr. Linda Bluestein, the Hypermobility MD, sits down with Emily Rich, an occupational therapist specializing in POTS (Postural orthostatic tachycardia syndrome), Ehlers-Danlos syndromes, and other chronic conditions. Emily, who is also a patient with hypermobile EDS and POTS, shares her insights on how occupational therapy can help individuals regain control over their daily lives. From adaptive tools to fatigue management strategies, Emily provides practical advice and discusses her groundbreaking research on group rehabilitation programs for POTS. Tune in to learn how to manage symptoms and improve your quality of life with expert guidance.
Takeaways:
Occupational Therapy for POTS: Occupational therapy can play a crucial role in helping POTS patients manage daily tasks and improve their quality of life through adaptive tools and strategies.
Group Rehabilitation Programs: Emily Rich has developed a group-based rehabilitation program that combines occupational therapy, physical therapy, and mindfulness to help POTS patients manage symptoms effectively.
Managing Fatigue: Fatigue is a significant challenge for individuals with POTS and EDS. Techniques like pacing, energy conservation, and strategic rest breaks can help manage energy levels.
The Role of Compression: Proper use of compression garments, including abdominal binders, can significantly help manage POTS symptoms by improving blood circulation and reducing symptoms like dizziness and fainting.
Holistic Approaches: Emily emphasizes the importance of a holistic approach to managing POTS and EDS, incorporating lifestyle changes, movement, and psychological support to enhance overall well-being.
Connect with YOUR Bendy Specialist, Dr. Linda Bluestein, MD at https://www.hypermobilitymd.com/.
This episode is sponsored by EDS Guardians. If you want to learn more, check them out here: https://www.edsguardians.org/
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: [email protected]
YOUR bendy body is our highest priority! 🧬🔬🦓
Learn about Emily Rich:
Instagram / YouTube: @emilyrichot
Linkedin: @emilymrich
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
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