Bendy Bodies with Dr. Linda Bluestein

In this Bendy Bodies with the Hypermobility MD podcast episode, making a MCAS documentary is discussed.  Distinguished participants in this collaborative effort include Dr. Leonard Weinstock, Dr. Larry Afrin, Dr. Tania Dempsey, Dr. Laurence Kinsella, and Dr. Linda Bluestein, alongside dedicated patient advocate Jill Brook.   YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.Key Highlights:1. The initiative incorporates both a documentary and an online educational library strategically designed to elevate awareness surrounding MCAS, Dysautonomia, and Hypermobility Spectrum Disorders.2. Renowned healthcare professionals, namely Dr. Leonard Weinstock, Dr. Larry Afrin, Dr. Tania Dempsey, Dr. Laurence Kinsella, and Dr. Linda Bluestein, in conjunction with patient advocate Jill Brook, are pivotal contributors to this initiative.3. The documentary aspires to elucidate the myriad challenges confronted by individuals navigating the complexities inherent in the triad of syndromes, emphasizing the imperative of heightened awareness among healthcare providers to facilitate more efficacious treatment modalities.4. Dr. Afrin underscores the prevalence of MCAS and advocates for its consideration in the differential diagnosis for patients with complex medical presentations.5. The term "dystrophism" is introduced within the discourse, signifying aberrations in growth and development propelled by dysfunctional mast cells.6. Participants candidly share their experiences during the documentary's filming process, underscoring the inherent difficulty of condensing intricate information into concise soundbites.7. The timely recognition of MCAS is underscored as a critical determinant for effective treatment interventions and an enhanced quality of life.8. The team is dedicated to elucidating the nuances of MCAS, POTS, and EDS through the medium of a documentary, with the aim of providing comprehensive knowledge about these medical conditions.9. Emphasis is placed on the significance of joint hypermobility. Should it give rise to complications, it may serve as a potential indicator for dysautonomia or MCAS.10. Dysautonomia serves as an encompassing term, inclusive of conditions such as POTS and Inappropriate Sinus Tachycardia. 11. Identifying growing pains (quite literally!) associated with these conditions can be a challenging endeavor. The gradual development poses a considerable challenge for all involved.12. A fervent commitment is made towards establishing an educational repository, replete with in-depth explorations by experts, delving into the intricacies of these subjects.13. The team candidly discloses the necessity for financial support to conclude their documentary project. Their overarching objective is to disseminate awareness about MCAS, POTS, and EDS.14. The documentary, at its core, is designed to render this information easily accessible, ensuring that individuals – be they patients, families, or clinicians – can acquire a comprehensive understanding of coping with these conditions.Chapters00:00 Introduction00:37 Creating Awareness and Increasing Treatment Options03:09 The Birth of the Documentary Project05:20 Filming in New York07:19 Filming in St. Louis10:32 The Motivation to Work with Complex Patients15:49 The Journey of Recognizing MCAS17:34 The Impact of MCAS Treatment21:00 Personal Experiences and Incorporating MCAS Treatment22:42 The Need for an Educational Library25:29 The Challenge of Condensing Information26:21 Describing MCAS in Sound Bites31:10 The Importance of Raising Awareness34:42 Growth and Development Abnormalities in MCAS40:03 Main Points about Hypermobility Syndromes and Dysautonomia44:48 Partnership with LDN Research Trust51:47 Final Words and Call for Support54:26 Recognition and Treatment of Unrecognized Patients55:44 Importance of Learning and Trying56:13 Gratitude for Dedicated Doctors56:47 Closing Remarks and ResourcesConnect with YOUR Bendy Specialist, Linda Bluestein, MD! 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!Products, organizations, and services mentioned in this episode:https://www.mcasfund.org/https://aimcenterpm.com/https://www.gidoctor.net/leonard-weinstock-mdhttps://www.ssmhealth.com/find-a-doctor/doctor-details/laurence-j-kinsella-mdhttps://www.hypermobilitymd.com/https://www.standinguptopots.org/#MCAS #film #documentary #HealthJourney #ChronicIllness #ChronicPain #EhlersDanlos #HSD #JointHypermobility #HypermobileLife #POTS #Dysautonomia #BendyBuddy #HypermobilityMD  #BendyBodies #UnexplainedHealthIssues #POTSsyndrome #MastCells #PainManagement  #PatientAdvocacy Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode, join thoracic surgeon and chest wall reconstruction expert Adam Hansen, MD, to learn about slipping rib surgery in EDS.  Well known for his innovative surgeries for slipping rib syndrome (SRS), Dr Hansen has treated close to 1000 SRS patients.  Many of his patients are challenged with Ehlers-Danlos Syndrome and other skeletal hypermobility disorders.  YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.Takeaways Slipping rib syndrome and other chest wall disorders are often related to skeletal hypermobility. Evaluation and diagnosis of chest wall problems require a thorough physical exam and imaging, such as CT scans. Symptoms of chest wall compression syndromes include pain, breathing difficulties, and organ dysfunction. Emerging areas of discovery include posterior joint disorders and bridging cartilage separation. Self-help strategies, such as improving posture and specific exercises, can help manage chest wall problems and potentially avoid surgery. Maintaining good posture and performing exercises that strengthen the back can help alleviate slipping rib syndrome. Taping strategies and lifestyle changes, such as using lumbar pillows and sit-to-stand desks, can provide relief and improve posture. Avoid high velocity manipulation, as it can exacerbate slipping rib syndrome. Candidates for surgery should have a strong core, realistic expectations, and should reduce or eliminate the use of pain medications before the procedure. The Hansen 3.0 technique is the preferred surgical procedure for slipping rib syndrome, offering better outcomes compared to previous techniques. The surgery has a low rate of complications, with the most common being collapsed lungs, hematomas, and wound infections. There is no significant difference in outcomes between patients with hypermobility spectrum disorder and those with Ehlers-Danlos syndrome. The likelihood of recurrence or additional slipped ribs after repair is low when the surgery is performed correctly. Physicians should be aware of slipping rib syndrome and other chest wall problems and stay updated on the latest techniques and treatments. Dr. Adam Hansen teaches other surgeons how to address slipping ribs and complex chest wall reconstruction. He has built a network of surgeons around the world to provide local treatment options for patients. There is a correlation between cervical instability and slipping ribs, and both are part of the broader issue of hypermobility and skeletal disorders. Focusing on key areas for stability, such as the core, can have a significant impact on overall care and muscle strength. Chapters00:00 Introduction and Warm-up01:03 Background and Expertise of Dr. Adam Hansen03:14 Understanding Slipping Rib Syndrome and Other Chest Wall Disorders09:32 Relationship Between Chest Wall Disorders and Skeletal Hypermobility14:01 Evaluation and Diagnosis of Chest Wall Problems21:16 Symptoms and Impact of Chest Wall Compression Syndromes24:49 Emerging Areas of Discovery in Slipping Rib Syndrome28:47 Evaluation of Chest Wall Problems: Physical Exam and Imaging36:37 Abdominal Compression Syndromes and Chest Wall Disorders41:19 Self-Help Strategies and Avoiding Surgery43:48 Posture and Exercise45:09 Taping Strategies and Lifestyle Changes46:23 Avoiding High Velocity Manipulation48:08 Qualifications for Surgery51:18 Preparing for Surgery53:21 Surgical Procedures58:08 The Hansen 3.0 Technique01:01:18 Outcomes and Complications01:20:06 Hypermobility Spectrum Disorder and EDS01:21:09 Male-Female Differences01:22:11 Recurrence and Additional Slipped Ribs01:23:49 Physician Awareness and Education01:24:58 Teaching Other Surgeons01:26:05 Building a Network of Surgeons01:26:50 Correlation Between Cervical Instability and Slipping Ribs01:28:38 Hypermobility and Skeletal Disorders01:29:59 Key Areas for Stability01:30:17 Hypermobility Hacks01:31:00 Finding Dr. Adam Hansen Online01:33:33 Closing RemarksThis important conversation with Dr. Adam Hansen about surgery for slipping rib syndrome and other chest wall problems will leave you feeling more knowledgeable and with a better understanding of the key factors to consider when contemplating surgery for these painful conditions.  Connect with YOUR Bendy Specialist, Linda Bluestein, MD! 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!Products, organizations, and services mentioned in this episode:http://www.youtube.com/@adamhansen6524Slipping Rib Syndrome Physical Examination   SD 480p:https://www.youtube.com/watch?v=Na69xXUZGhg Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode, YOUR guest is Jill Miller, author of the book 'Body by Breath: The Science and Practice of Physical and Emotional Resilience.'  Jill has 30 years of corrective movement expertise that forges links between the worlds of yoga, massage, athletics, and pain management. Her signature self-care fitness programs, Yoga Tune Up® and The Roll Model® are found at gyms, yoga studios, hospitals, athletic training facilities and corporations worldwide. Jill is the former anatomy columnist for Yoga Journal, has been featured in New York Times, Wall Street Journal, Shape, Women’s Health, O, the Today Show, and is a contributing expert on the Oprah Winfrey Network. YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.TakeawaysJill Miller's book 'Body by Breath' is a comprehensive guide to physical and emotional resilience.Bendy bodies should care about fascia because it is the organizing tissue of the entire body and affects mobility and stability.Self-mobilization and self-myofascial release are important for bendy bodies to address tension and enhance proprioception.The five P's of the parasympathetic nervous system (perspective, place, position, pace of breath, and palpation) can help induce relaxation and enhance body awareness.The low back decompression exercise using therapy balls can provide relief and improve proprioception for bendy bodies. Improving core strength and breathing is essential for hypermobile bodies.Understanding zone one, zone two, and zone three breathing can help manage pain, movement, and emotional states.Self-fascial treatments, such as deep gut and rib massage, can improve breathing and alleviate hypertonicity.Extracorporeal shockwave therapy is a non-invasive treatment that can reduce inflammation and alleviate pain.Community support and engagement are crucial for managing hypermobility.High-intensity interval training can improve aerobic capacity and overall well-being for hypermobile individuals.  It is highly recommended to have individual guidance for this.Chapters00:00 Introduction and Background03:01 Inspiration for Writing the Book09:11 Organization of the Book13:30 Why Bendy Bodies Should Care About Fascia15:40 Starting with Limited Budget19:02 Helpful Exercises for Bendy Bodies23:27 Addressing Mixed Picture of Bendiness and Stiffness28:07 The Five P's of the Parasympathetic Nervous System36:14 Low Back Decompression Exercise46:07 Improving Core Strength and Breathing51:41 Understanding Zone One, Zone Two, and Zone Three Breathing57:29 Self-Fascial Treatments for Better Breathing01:00:10 Managing Hypermobility Symptoms01:03:35 Extracorporeal Shockwave Therapy for Acute Pain01:09:10 The Power of Community and High-Intensity Interval TrainingThis important conversation with Jill Miller about using the breath to reduce pain will leave you feeling more knowledgeable and with a better understanding of the contributing factors to suboptimal pain control.  Connect with YOUR Bendy Specialist, Linda Bluestein, MD! 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!Products, organizations, and services mentioned in this episode:www.tuneupfitness.comhttps://thereadystate.com/https://thereadystate.com/product/becoming-a-supple-leopard-2nd-edition/https://fasciaguide.com/experts/carla-stecco/https://jen.health/https://www.tuneupfitness.com/shop/online-course/roll-into-hiithttps://patternpt.com/https://www.youtube.com/@TuneUpFitnesshttps://www.amazon.com/Yoga-Bendy-People-Optimizing-Hypermobility/dp/B0B2TSN3W3/ref Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode, YOUR guest is Colin Halverson, PhD.  He received his Ph.D. in linguistic and medical anthropology from the University of Chicago, where he studied communication issues in medical genetics, based on fieldwork at Mayo Clinic. At Chicago, he also completed a fellowship in clinical ethics, and then a postdoctoral fellowship in medical ethics at Vanderbilt. He is currently a professor at Indiana University School of Medicine, where his research focuses on ethical care for patients with rare disease, in particular Ehlers-Danlos Syndrome (EDS).YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.Takeaways Patients with Ehlers-Danlos syndrome often face an antagonistic relationship with healthcare professionals, leading to mistrust and negative health outcomes. The diagnostic odyssey experienced by patients with EDS can be likened to a hero's journey, characterized by challenges, misdiagnoses, and a long path to diagnosis. The panoply of symptoms in EDS and the complexity of chronic pain make it difficult for patients to describe their experiences and receive appropriate care. Clinician-associated traumatization is a distinct construct that captures the negative experiences and trauma patients with EDS face in their interactions with healthcare professionals. Building a trustworthy team of clinicians and seeking support from the EDS community can help patients navigate the challenges of their condition and improve their healthcare experiences. Chapters00:00 Introduction00:29 Dr. Halverson's Background and Research Interest03:02 The Hero's Journey of Patients with Ehlers-Danlos Syndrome05:51 Challenges Faced by Patients with Ehlers-Danlos Syndrome07:02 Antagonistic Relationship with Healthcare Professionals08:29 Impact of Antagonistic Relationship on Patients09:47 Triggers for Transition into Unbearable Symptoms12:36 The Panoply of Symptoms in Ehlers-Danlos Syndrome13:44 Importance of Panoply of Symptoms in Diagnosis15:22 Challenges in Describing Multi-Systemic Symptoms16:26 Numeric Pain Scales and the Complexity of Chronic Pain19:40 Research on Hypermobile Ehlers-Danlos Syndrome20:39 Research on Other Forms of Ehlers-Danlos Syndrome23:56 Failure of Empathy in Patient-Provider Relationships27:24 Worse Health Outcomes and Trust Issues28:06 Impact of Failure of Empathy on Patients30:33 Dealing with Antagonistic Relationships31:45 The Isolation and Invisibility of Ehlers-Danlos Syndrome36:12 Clinician-Associated Traumatization and its Differences from Other Constructs39:21 Surprising Aspects of the Research42:01 Recommendations for Patients with Clinician-Associated Traumatization45:01 Future Directions of Research49:04 Closing RemarksThis important conversation with Dr. Halverson about clinician-associated trauma in patients with Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorder (HSD) will leave you feeling better prepared to advocate for the care you need.  Connect with YOUR Bendy Specialist, Linda Bluestein, MD! 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!Products, organizations, articles, and services mentioned in this episode:https://bioethics.iu.edu/people/colin-halverson.htmlhttps://pubmed.ncbi.nlm.nih.gov/34524722/https://doi.org/10.1016/j.ssmqr.2023.100237Dr. Halverson can be reached at chalver@iu.edu.#InvisibleIllness #HealthJourney #PatientAdvocacy #ChronicIllness #ChronicPain #EhlersDanlos #HSD #JointHypermobility #HypermobileLife #BendyBuddy #HypermobilityMD #BendyBodies #EhlersDanlosResearch #MedicalGaslighting #PatientSupport #ResearchOpportunity #DiagnosticJourney Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode, YOUR guest is Lisa Ralston, a physical therapist with over 30 years of experience in orthopedics, joint hypermobility, foot pain, and sports medicine. Since 2009, she has traveled internationally treating Team USA Olympians and World level figure skaters. Lisa was the physical therapist for Team USA figure skating for the 2022 Winter Olympics in Beijing.  Lisa is the owner and founder of Ralston Physical Therapy and Wellness in Arvada, CO. YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD.Takeaways Posture and alignment play a crucial role in foot pain in people with joint hypermobility. Orthotics can be an effective intervention for managing foot pain in hypermobile patients. Assessing and addressing foot pain early in children can prevent the development of other pain problems. Proper shoe selection and tying techniques are important for managing foot pain. Failed physical therapy may be due to a lack of addressing all systems and factors contributing to the condition. Orthotics can fail if they are not properly assessed and customized to the individual's foot flexibility and posture. Over-the-counter orthotics can be a more affordable option, but it is important to choose ones that provide proper support and alignment. Self-mobilization exercises, such as using a foam ball to mobilize the foot joints, can help improve foot mobility and relieve pain. Addressing foot stability and proprioception is crucial for maintaining proper foot alignment and preventing issues related to hypermobility. Hypermobility in ice skaters is a specific topic that may be worth exploring in a future episode. Foot problems are common and can cause significant discomfort and pain. Proper lacing techniques can help alleviate foot pain and discomfort. Lisa Ralston provides valuable insights and tips for managing foot problems. Chapters00:00 Introduction and Guest Introduction02:05 Causes of Foot Pain in People with Joint Hypermobility06:12 Approach to Hypermobility Patients08:18 Common Causes of Foot Pain10:10 Pain Begets Pain11:36 Approach to Hypermobile Patients14:59 Orthotics for Children17:02 Different Approach for Hypermobile Patients19:06 Assessment and Treatment of Foot and Ankle21:00 Shoe Selection and Tying Techniques23:19 Different Foot Types and Shoe Recommendations26:31 Importance of Firm Heel Counter in Shoes27:45 Tying Shoes Properly31:40 Recommended Shoe Brands34:53 Orthotics and Failed PT39:51 Addressing Failed PT47:51 Orthotics and Failed Orthotics53:48 Over-the-Counter Orthotics56:06 Self-Mobilization of Feet01:08:46 Hypermobility in Ice Skaters01:09:16 Hypermobility Hacks01:09:26 Foot Problems and Solutions01:10:21 Lacing Techniques for Foot Comfort01:10:54 Finding More Information OnlineThis important conversation about foot pain and orthotics in people with Ehlers-Danlos Syndromes (EDS), Hypermobility Spectrum Disorder (HSD) and other hypermobility conditions will leave you feeling more knowledgeable, better prepared to advocate for the care you need, and with a better understanding of the contributing factors to suboptimal foot function.  Connect with YOUR Bendy Specialist, Linda Bluestein, MD! 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!Products, organizations, and services mentioned in this episode:https://lisaralstonpt.janeapp.com/https://www.bauerfeind.com/b2c/https://www.oofos.com/https://www.abeofootwear.com/https://www.humanlocomotion.com/https://www.brooksrunning.com/en_uhttps://www.hoka.com/en/us/https://www.aetrex.com/homehttps://yoursole.com/ushttps://www.vasylimedical.com/https://www.birkenstock.com/ushttps://www.nike.com/https://www.saucony.com/en/homehttps://naot.com/https://www.keenfootwear.com/https://www.merrell.com/US/en/homehttps://www.chacos.com/US/en/homehttps://www.mephisto.com/us/https://www.theballetblog.com/about-us/lisa-howell/https://nyulangone.org/locations/harkness-center-for-dance-injurieshttps://www.vasylimedical.com/products/easyfithttps://www.humanlocomotion.com/product/peel-and-stick-balances-sesamoid-balance/ Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode, YOUR guest is Dacre Knight, MD.  Dr. Knight established a specialty clinic for treating patients with hypermobility syndromes including hypermobile Ehlers-Danlos Syndrome (hEDS) and hypermobility syndrome disorder (HSD) at Mayo Clinic Jacksonville, Florida in 2019.  YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD. Explored in this episode:·  What specialty evaluations are most important for patients with hypermobility syndromes·  What tests he feels are most helpful for patients with Ehlers-Danlos Syndromes (EDS) and HSD·  How they determine when to perform genetic testing and the findings in this group of patients·  How his approach has evolved since the clinic’s inception in 2019·  The research that he has conducted and relevant findings·  The role of autoimmunity in EDS and HSD·  Findings in patients with orthostatic intolerance vs Postural Orthostatic Tachycardia Syndrome (POTS)·  The role of the immune system in symptomatic joint hypermobility·  The relationship with fibromyalgia·  What percentage of patients are diagnosed with hEDS vs HSD·  What he says to people who assume that HSD is a less serious conditionThis important conversation about Dr. Knight’s approach to the evaluation and treatment of hEDS and HSD will leave you feeling more knowledgeable, better prepared to advocate for the care you need, and with a better understanding of the evaluation process.  Connect with YOUR Bendy Specialist, Linda Bluestein, MD! 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!Products, organizations, and services mentioned in this episode:Ehlers-Danlos Syndrome Newsfeed | Mayo Clinic ConnectEhlers-Danlos Syndrome Clinic in Florida - Overview - Mayo Clinichttps://www.mayoclinic.org/biographies/knight-dacre-m-d/bio-20477206https://x.com/knidac?s=21https://www.frontiersin.org/articles/10.3389/fmed.2023.1096180/fullhttps://link.springer.com/content/pdf/10.1007/s42399-022-01218-w.pdfhttps://pubmed.ncbi.nlm.nih.gov/35687402/https://www.ehlers-danlos.com/https://www.ehlers-danlos.com/healthcare-professionals-directory/#BendyBuddy #HypermobilityMD #POTSawareness #HolisticHealth #MayoClinicJax#SpecialtyClinic #HealthInnovation #WholeBodyTreatment #MedicalCollaboration#InvisibleIllness #PatientAdvocacy #ChronicIllness #ChronicPain #EhlersDanlos #HSD #JointHypermobility Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode, YOUR guest is gastroenterologist Leonard Weinstock, MD, author of over 150 peer-reviewed journal articles.  His extensive research on MCAS (Mast Cell Activation Syndrome) and diseases of the esophagus, stomach, small intestine, and colon has been presented at national and international conferences. He is actively researching the connection of the gut and small intestinal bacterial overgrowth (SIBO) with several medical problems, including restless legs syndrome (RLS) and chronic pelvic pain syndromes. He presented several lectures in Oregon at the first SIBO symposium and in France at the international rosacea study group.YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD. Explored in this episode:·  What can cause abdominal pain in those with EDS (Ehlers-Danlos Syndromes), MCAS (Mast Cell Activation Syndrome) and/or dysautonomia (syndromes like POTS - Postural Orthostatic Tachycardia Syndrome) ·  How gastrointestinal tract symptoms and extraintestinal problems like RLS (restless leg syndrome), rosacea, and interstitial cystitis are related·  What unique treatments are available for restless leg syndrome, rosacea, and interstitial cystitis·  How Dr. Weinstock’s medical practice evolved after becoming “MCAS aware, POTS aware and EDS aware” ·  What correlations exist between Crohn's disease, irritable bowel disease and RLS·  Why it is so crucially important to listen to AND believe our patients·  How Mast Cell Activation Disease and MCAS differ from one another·  Why the term “syndrome” can be problematic·  What environmental factors can play a role in MCAS·  When to suspect a compression syndrome (like Median Arcuate Ligament Syndrome or MALS, Nutcracker Syndrome, or pelvic congestion syndrome), visceroptosis (drooping of the intestines) or gastroparesis·  What testing can be performed for MCAS and the significance of tryptase levels ·  How YOU can help support our nonprofit documentary film and free online educational library, Still Standing.   The goal of our documentary film and free online educational library is to promote wider awareness and physician education about three complex chronic conditions, MCAS, dysautonomia and hypermobility syndromes. Better recognition will help patients get treatment and hope for a better quality of life.This important conversation about extraintestinal manifestations of gastrointestinal diseases will leave you feeling more knowledgeable, better prepared to advocate for the care you need, and with a better understanding of the interaction of the gastrointestinal system with other bodily systems.  Connect with YOUR Bendy Specialist, Linda Bluestein, MD! 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!Products, organizations, and services mentioned in this episode:https://www.gidoctor.net/provider/leonard-weinstock-mdhttps://www.bendybodiespodcast.com/34-highlighting-gi-disorders-with-leonard-weinstock-md/https://www.mcasfund.org/https://www.nowleap.com/leap/https://www.ifm.org/https://ldnresearchtrust.org/https://www.ldnscience.org/https://www.genebygene.com/ #BendyBuddy #HypermobilityMD #GITract #EDSInsights #EhlersDanlos #GastroHealth #ChronicIllness #MCAS #MCAD #PotsSyndrome  #RestlessLegSyndrome #LowDoseNaltrexone #MALS #CrohnsDisease #GutHealth #HypermobilityPodcast #PodcastDiscoveries #EDSdoctor #CompressionSyndrome Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode, YOUR guest is Brianna Cardenas, DMSC, PA-C, ATC and the founder of Healed and Empowered.  Brianna courageously shares her own personal journey with Ehlers-Danlos Syndrome (EDS), cervical instability, spinal CSF leak, and dysautonomia, shedding light on the mistreatments she endured - both as a patient and a healthcare professional. YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD. Explored in this episode:·  Inequality in healthcare and how we can best advocate for ourselves·  Why we should prioritize diversity, equity, and inclusion in medical spaces ·  The need for personal responsibility when learning about sensitive topics ·  Discrimination and power dynamics in the healthcare setting ·  Handling microaggressions·  Addressing internalized ableism  ·  The importance of outward visible signs of safety for marginalized groups such as LGBTQ plus and BIPOCThis important conversation about inequality in healthcare will leave you feeling more informed, better prepared to tackle that next step, and with a better understanding of the multitude of factors that can impact the healthcare you receive.  Connect with YOUR Bendy Specialist, Linda Bluestein, MD! 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!Products, organizations, and services mentioned in this episode:https://www.healedandempowered.com/ #Podcast #EDSPodcast #HealthcareInequality #LGBTQ #BIPOC #Hypermobility #HypermobilityPodcast #HypermobilityMD #BendyBuddy  #ChronicIllness #ChronicPain #InvisibleIllness #HypermobileHacks #EhlersDanlosSyndrome #EhlersDanlos #PainManagementJourney #EDSdoctor Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode, YOUR guest is neurosurgeon, Paolo Bolognese, MD, founder of the Chiari Neurosurgical Center in New York.  Dr. Bolognese is also on the Board of Directors of the American Syringomyelia & Chiari Alliance Project, Inc. (ASAP), on the Scientific Education and Advisory Board of the Chiari Syringomyelia Foundation (CSF), and is a member of the International Consortium on EDS, HSD, and Related Disorders. The Chiari EDS Center is focused on the diagnosis and treatment of Chiari I Malformation, Syringomyelia, Craniocervical Instability, Tethered Cord, Eagle Syndrome, Idiopathic Intracranial Hypertension, and Intracranial Hypotension.  Dr Bolognese’s surgical experience includes more than 1,600 Chiari Decompressions and 900 Craniocervical Fusions, 300 of which with condylar screws.  He is on the Board of the main national and international organizations focused on Chiari and Syringomyelia and has also made contributions in the field of Intraoperative Ultrasound and Laser Doppler Flowmetry.YOUR guest co-host is Pradeep Chopra, MD, Harvard-trained anesthesiologist double Board Certified in Pain Management and Anesthesiology, Director of the Center for Complex Conditions and Assistant Professor, Brown Medical School with a special interest in chronic complex pain conditions and their associated co-existing conditions. YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD. Explored in this episode:·   How Dr Bolognese discovered the link between Ehlers-Danlos Syndromes (EDS) and Chiari I malformation ·   Why people with EDS are at increased risk of craniocervical instability·   What type of imaging he prefers for the evaluation of Chiari I malformation and/or cervical instability ·   Why he started performing surgery for Eagle’s Syndrome ·   Why he feels invasive cervical traction is an essential part of the neurosurgical evaluation for upper cervical spine problems·   Causes of elevated intracranial pressure This episode is really special as it is rare to get a neurosurgeon's point of view outside of a medical appointment.  It may be easier for you to have the transcript in front of you while you are watching this episode of the Bendy Bodies Podcast on our YouTube channel or listening to this episode on your favorite podcast player.  Dr. Bolognese uses his hands a lot for demonstration so you may find watching this episode on YouTube beneficial.This important conversation about neurosurgical problems will leave you feeling hopeful, prepared to tackle that next step, with a better understanding of the multitude of factors that can impact symptoms.  Connect with YOUR Bendy Specialist, Linda Bluestein, MD! 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!Products, organizations, and services mentioned in this episode:https://chiariedscenter.com/Access Dr. Bolognese's intake forms here.https://www.dropbox.com/scl/fo/2vrapu5w2b0ara2pyke8l/h?rlkey=06e9q7pjhwhyypo0xjhn0jkgy&dl=0 #Hypermobility #EDSpodcast #JawPain #TMD #TMJ #HypermobilityPodcast #HypermobilityMD #BendyBuddy  #ChronicIllness #ChronicPain #InvisibleIllness #HypermobileHacks #EhlersDanlosSyndrome #PainManagementJourney #PhysicalTherapy #EDSdoctor Learn more about your ad choices. Visit megaphone.fm/adchoices

In this episode, YOUR guest is Julie Robinson-Smith, DDS, diplomate of the American Board of Oral Medicine, a diplomate of the American Board of Orofacial Pain and an instructor of Orofacial Pain at the University of Colorado Anschutz School of Dental Medicine.  Following dental school, she served in the US Air Force for five years as a general dentist. After her time in the Air Force, she completed a two-year residency in Orofacial Pain and Oral Medicine at the University of Southern California. Dr Smith is also Dr. Bluestein’s amazing TMD (jaw and facial pain) doctor!  YOUR host, as always, is Dr. Linda Bluestein, the Hypermobility MD. Explored in this episode:·  Why the jaw is problematic so frequently in those with joint hypermobility·  How ligamentous laxity contributes to jaw dysfunction ·  The influence of hormones and puberty on jaw pain and function ·  Open locking - what is it and how can you reduce the risk?·  How you can make dental visits less traumatic This important conversation about orofacial pain will leave you feeling hopeful, prepared to tackle that next step, with a better understanding of the multitude of factors that can impact pain in the teeth, jaw pain, and open and closed locking.   Connect with YOUR Bendy Specialist, Linda Bluestein, MD! 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!Products, organizations, and services mentioned in this episode:https://www.ofpcos.com/ #Hypermobility #EDSpodcast #JawPain #TMD #TMJ #HypermobilityPodcast #HypermobilityMD #BendyBuddy  #ChronicIllness #ChronicPain #InvisibleIllness #HypermobileHacks #EhlersDanlosSyndrome #PainManagementJourney #PhysicalTherapy #EDSdoctor Learn more about your ad choices. Visit megaphone.fm/adchoices