Episódios
-
In this episode of Zebra Talks, host Dr. Libby Hinsley welcomes Dr. Melissa Koehl to discuss her journey with Hypermobile Ehlers-Danlos Syndrome (EDS) and how it has shaped her career in physical therapy.
Melissa shares her personal struggles with diagnosis, the importance of recognizing hypermobility in the context of fibromyalgia, and the intersection of these conditions with other systemic issues like dysautonomia and mast cell activation syndrome. She also discusses the significance of personalized exercise programs, gut health, and the holistic approaches necessary to manage these complex conditions effectively.
00:00 Introduction to Zebra Talks
00:35 Meet Melissa Kahle: A Journey with Hypermobile EDS
01:40 Melissa's Personal and Professional Journey
03:35 The Diagnosis and Its Impact
06:19 Exploring Fibromyalgia and Hypermobility
06:48 Understanding Fibromyalgia: Diagnosis and Criteria
12:04 Treatment Approaches for Fibromyalgia
16:13 Exercise and Movement Strategies
22:35 Exploring Mast Cells and Fibromyalgia
24:28 The Gut Microbiome and Pain Connection
24:53 Personal Struggles with SIBO
29:20 Navigating Healthcare as a Hypermobile Human
31:59 Creating Resources for the Hypermobile Community
37:33 Final Thoughts and Resources
-
In this episode of Zebra Talks, host Dr. Libby Hinsley welcomes Dr. Jessica Eccles, a prominent consultant psychiatrist and researcher, to discuss her personal and professional experiences with hypermobility syndromes. Dr. Eccles shares insights from her extensive research on the links between hypermobility, anxiety, neurodevelopmental conditions, and chronic health issues such as fibromyalgia and ME/CFS. She explains how differences in brain structure and function, along with abnormal autonomic nervous system responses, can affect those with hypermobility. Dr. Eccles also introduces a novel treatment approach, the ADAPT therapy, designed to reduce anxiety in hypermobile individuals. The conversation highlights the importance of proper diagnosis, medical education, and innovative therapeutic strategies for managing these complex conditions.
00:00 Introduction to Zebra Talks
00:35 Meet Dr. Jessica Echols
01:34 Dr. Echols' Personal Journey with Hypermobility
04:00 Discovering the Link Between Hypermobility and Anxiety
08:50 Exploring Brain Differences in Hypermobile Individuals
11:00 The Role of the Involuntary Nervous System
17:02 Novel Treatments and Future Research
21:05 Connections Between Hypermobility and Neurodivergence
35:45 Challenges and Future Directions in Medical Education
39:53 Conclusion and Final Thoughts
-
Estão a faltar episódios?
-
If you have a bendy neck, this one's for you!
For this week's episode of Zebra Talks, Libby has a fascinating conversation with Taylor Goldberg, a chiropractor turned virtual hypermobility coach. Taylor shares a bit about her personal journey with hypermobility and her shift to a virtual coaching model, and then helps us understand all things upper cervical instability (UCI), including its causes, symptoms, diagnostic challenges, and treatment options. UCI affects a whole lot of people with hypermobility, but good news: the most severe cases requiring surgery are quite rare even among us bendy types. Whew!
Taylor unpacks a lot of definitions such as distinguishing between hypermobility and instability (no, they're not the same thing!). She also covers lots of good info about safe exercise practices, and emphasizes why it's so important to avoid certain chiropractic adjustments. The episode also touches on yoga practices for hypermobile individuals and the significance of conservative care in managing UCI.Highlights of this episode include:00:00 Introduction to Zebra Talks00:35 Meet Taylor Goldberg: Chiropractor to Hypermobility Coach01:49 Taylor's Personal Journey with Hypermobility03:40 Understanding Hypermobility and Instability06:11 Upper Cervical Instability: Symptoms and Diagnosis14:42 Managing Upper Cervical Instability19:01 Activities to Avoid and Chiropractic Cautions24:12 Challenges in Chiropractic and PT Training25:23 The Need for Comprehensive Connective Tissue Education27:02 Creating Realistic Expectations in Recovery27:49 Step-by-Step Recovery Process29:39 Exercise Categories and Proprioception33:46 Managing Upper Cervical Instability35:01 Yoga and Hypermobility39:11 Resources and Offerings for Hypermobility41:16 Conclusion and Final Thoughts
-
In this episode of Zebra Talks, Dr. Libby Hinsley welcomes Lisa Sherman, a licensed acupuncturist with expertise in functional medicine and molecular biology, to discuss digestive issues among people with hypermobility syndromes.
They delve into the prevalence of gastrointestinal problems like dysmotility, microbial dysbiosis, and structural droopiness that hypermobile individuals often face. Lisa offers insights on contributing factors such as the autonomic nervous system and mast cell activation, and shares practical advice for lifestyle changes, nutritional strategies, and supplements that can help manage these conditions. The episode highlights the importance of mindful eating, movement practices, and vagus nerve activation for improving gut health in hypermobile individuals.
Highlights of this episode include:
00:35 Meet Lisa Sherman: Expert on Bendy Bellies01:39 Understanding Digestive Issues in Hypermobile People02:56 Prevalence and Impact of GI Issues04:00 Common GI Conditions in the Bendy Population07:03 Functional Gastrointestinal Disorders (FGIDS)08:54 The Role of the Nervous System in Digestion11:14 Hypermobile Gut and Hypomotility18:19 Testing and Treating Gut Motility Issues28:54 The Bendy, Itchy, and Dizzy Trifecta37:57 Understanding Functional Gastrointestinal Disorders39:24 Practical Tips for Gut Health43:44 The Importance of Protein and Collagen49:15 Navigating Histamine and FODMAPs56:47 Supplements and Prokinetics01:04:15 Vagus Nerve Stimulation and Lifestyle Changes01:08:53 Research and Future Directions01:10:25 Conclusion and Contact Information
-
In this episode of Zebra Talks, Libby welcomes biomechanics expert Jules Mitchell to discuss the science of stretching and connective tissue behavior, particularly in the context of hypermobility syndromes.
Jules provides insights from her extensive research and professional experience, addressing common misconceptions about stretching, the adaptive capabilities of connective tissue, and how people with hypermobility can safely engage in physical activities. The discussion includes the impact of mechanical tension on tissue adaptation, the importance of understanding individual responses to stretching, and the role of exercise science in improving joint stability and resilience.
Jules, who is also the author of 'Yoga Biomechanics Stretching Redefined' and an educator of yoga teachers worldwide, shares valuable perspectives on the interplay between biomechanics and yoga practices, offering practical advice for both practitioners and instructors.
00:35 Meet Jules Mitchell: Yoga Biomechanics Expert02:18 Jules' Journey into Stretching Research04:55 Understanding Connective Tissue and Hypermobility12:46 The Science of Stretching and Tissue Adaptation18:37 Practical Advice for Bendy People40:22 Final Thoughts and Resources
-
In this Zebra Talks episode, host Dr. Libby Hinsley interviews Alanna Trzcinski, host of the Endo Battery Podcast and president of EndoVillage. The episode delves into Alanna's journey with endometriosis, advocacy work, and the surprising intersections with hypermobility syndromes. Alanna sheds light on the challenges of living with both conditions, the importance of excision surgery for endometriosis, and the nuanced nature of these overlapping chronic illnesses. The two discuss the critical role of multidisciplinary care, the need for increased research, and the psychological aspects of managing chronic pain. Listeners will gain valuable insights into the complexity of these conditions and the importance of informed, holistic care.
Highlights of this episode include:
00:35 Meet Alanna Trzcinski: Advocate for Endometriosis Awareness02:24 Alana's Personal Journey with Endometriosis05:21 Understanding Endometriosis: Definitions and Misconceptions07:25 The Overlap Between Endometriosis and Hypermobility Syndromes11:33 Challenges in Diagnosing and Treating Endometriosis15:18 Effective Management and Treatment Options18:54 The Importance of Multidisciplinary Care24:54 Surgical Treatments: Excision vs. Ablation31:20 Living with Endometriosis and Hypermobility34:08 Advocacy and Future Research40:39 Final Thoughts and Resources
-
This episode of Zebra Talks features a discussion with Naomi Bauer, a Doctor of Physical Therapy with personal and professional experience in treating dysautonomia and Long COVID. Hosted by Dr. Libby Hinsley, they explore the challenges and management strategies for those living with hypermobility syndromes, focusing on the overlap between long COVID, dysautonomia, and hypermobility.
Naomi shares her journey from a healthcare professional to a patient after developing long COVID dysautonomia herself and highlights the importance of understanding personal energy management through pacing and the 50 percent rule. The conversation also addresses potential underlying connections between hypermobility and the increased risk of developing long COVID, emphasizing the significance of social support, proactive resting, and setting boundaries for energy use.
Highlights of this episode include:
00:32 Meet Naomi Bauer: A Journey from PT to Long COVID Survivor01:42 Exploring the Intersection of Long COVID and Hypermobility Syndromes01:56 Naomi's Personal Battle with Long COVID and Suspected Hypermobility05:55 The Complex World of Dysautonomia: From POTS to Long COVID14:28 The Link Between Hypermobility Syndromes and Long COVID23:47 Managing Long COVID and Hypermobility: Strategies for Recovery41:24 Concluding Thoughts and Finding Support
-
In this episode of the Zebra Talks podcast, host Libby Hinsley interviews Megan Beach Gomes, a specialized pelvic health physical therapist focusing on pelvic pain and perinatal care. She discusses her journey into specializing in pelvic health and the importance of physical therapy for pregnant and postpartum individuals, especially those dealing with hypermobility.
Gomes highlights the key role of the hormone relaxin during pregnancy and its effects on the body's mobility, the challenges hypermobile individuals may face during and after pregnancy, and provides practical advice and exercises to help manage symptoms. Gomes emphasizes the need for comprehensive care, including pelvic support belts, specific exercises, and how to deal with issues such as diastasis recti postpartum. She also touches on finding specialized help through resources like the EDS Society, the importance of patient advocacy, and options like telehealth for individuals with limited access to specialized care.
Highlights of this episode include:
- Welcome to Zebra Talks: Introducing Megan Beach Gomes- Journey into Pelvic Health: Megan's Story- Understanding Hypermobility in Pregnancy- Managing Pregnancy Symptoms for the Hypermobile- Navigating Labor and Delivery with Hypermobility- Preparation and Advocacy for Hypermobile Pregnant Persons- Pregnancy Wellness Tips for the Hypermobile- Ergonomic Supports for Comfortable Sitting- Exercise Tips for Pregnancy with Increased Laxity- Hip Hinge: The Ultimate Exercise for Pregnancy- Managing Pelvic Girdle Pain with Simple Adjustments- Postpartum Considerations for the Bendy Population- Navigating Postpartum Recovery: Scar Care and Core Support- Addressing Diastasis Recti in Postpartum Recovery- Preventing and Managing Mommy Thumb Postpartum- Finding Specialized Perinatal Physical Therapy
-
In this episode of Zebra Talks, host Dr. Libby Hinsley discusses the intersection of hypermobility syndromes and gender affirming care with Dr. Laura Ross, a pelvic health physical therapist and sex counselor. Dr. Ross, based in Decatur, Georgia, shares her journey and passion for providing inclusive care for all genders, focusing on pelvic pain, sexual health, pelvic health in athletes, and care specific to transgender and gender expansive individuals. She emphasizes the importance of creating a safe space for LGBTQ+ patients, especially those dealing with hypermobility.
Their conversation explores the high prevalence of hypermobility among individuals seeking gender affirming surgeries, citing research that highlights a significant connection between hypermobility and gender diversity. The conversation also covers the importance of comprehensive care that includes prehabilitation, rehabilitation, and the consideration of sensory processing issues.
Dr. Ross stresses the necessity for healthcare providers to develop competencies in treating gender diverse individuals, suggesting resources for both patients and practitioners. The episode aims to raise awareness about the need for accessible and affirming healthcare for hypermobile and gender diverse communities.
Highlights of this episode include:
00:38 Introducing Dr. Laura Ross: A Journey into Pelvic Health and Gender Affirming Care02:24 Exploring the Intersection of Hypermobility and Gender Affirming Care04:39 Demystifying Gender Affirming Care: Terminology and Importance10:35 The Link Between Hypermobility and Gender Diversity: Emerging Research22:17 Gender Affirming Surgeries and Hypermobility: Pre and Postoperative Considerations39:19 Empowering Healthcare: Inclusivity and Competency in Gender Diverse Care45:46 Connecting with Dr. Laura Ross and Final Thoughts
-
In this episode of Zebra Talks, host Dr. Libby Hinsley delves into the complexities of pelvic health in individuals with hypermobility syndromes with special guest Beth Kemper. Beth is a seasoned physical therapist with dual certification in Women's Health and Pelvic Health. She discusses the prevalence of hypermobility among her pelvic PT patients and the unique challenges they face.
The conversation covers a range of pelvic-related issues, including elimination dysfunctions, pelvic organ prolapse, gynecological concerns, and pelvic pain, offering insights into their treatment. Beth emphasizes the importance of a comprehensive approach that includes manual therapy and retraining of the pelvic floor and related muscle groups, alongside utilizing support devices where necessary.
Additionally, the podcast touches on the importance of proper diagnosis and the potential impact of surgeries. Listeners are encouraged to seek skilled pelvic PTs, and the episode underscores the importance of hope and proactive care in managing pelvic health for the hypermobile population.
Highlights of this episode include:
00:36 Meet Beth Kemper: A Deep Dive into Pelvic PT and Hypermobility01:23 Exploring the Prevalence and Impact of Hypermobility in Pelvic PT04:09 Unpacking Common Pelvic Issues in the Bendy Population11:58 Addressing Incontinence and Elimination Challenges13:01 Comprehensive Treatment Approaches for Pelvic Conditions18:58 The Importance of Tailored Rehabilitation for Hypermobility20:04 Exploring Supportive Devices and Surgical Considerations32:40 Finding the Right Pelvic PT: Tips and Advice37:11 Final Thoughts and Upcoming Episodes
-
This episode of Zebra Talks features Dr. Libby Hinsley, physical therapist and author, hosting Emily Rich, an occupational therapist with a focus on treating Ehlers Danlos syndromes, dysautonomia, and related conditions. The discussion begins with Emily sharing her personal journey with Hypermobile Ehlers Danlos Syndrome and her motivation for specializing in this field. She explains the role of occupational therapy in managing these conditions, emphasizing patient-partnered, evidence-based treatment approaches to improve daily living activities. The conversation delves into the nuances of dysautonomia, particularly Postural Orthostatic Tachycardia Syndrome (POTS), detailing its symptoms, diagnosis, and the three main types: neuropathic, hypovolemic, and hyperadrenergic POTS. Emily outlines the 'big five' non-pharmacological management strategies (compression, increasing blood volume, exercise/movement, managing anxiety, and sleeping on an incline) and discusses the importance of pharmaceutical management. She stresses the significance of tailored treatment plans, the potential of vagus nerve stimulation, and encourages seeking knowledgeable healthcare providers. Emily ends by highlighting resources for both patients and healthcare professionals looking to learn more about managing POTS and related conditions.
Highlights of this episode include:
00:33 Introducing Emily Rich: A Deep Dive into Occupational Therapy for EDS and POTS01:32 Emily's Personal Journey with Hypermobility and Career Shift02:40 The Role of Occupational Therapy in Managing Chronic Conditions03:45 Exploring Dysautonomia and POTS: Definitions and Diagnoses07:34 The Common Forms of Dysautonomia in Hypermobility Syndromes10:57 Diagnosing POTS: Techniques and Challenges11:53 Understanding the Different Types of POTS21:47 Non-Pharmacological Approaches to Managing POTS33:38 Pharmaceutical Management of POTS: A Critical Overview37:09 Innovative Treatments and the Future of POTS Management39:53 Empowering Patients and Providers: Resources and Education42:22 Closing Thoughts and Resources for Further Learning
-
In this edition of Zebra Talks, Libby welcomes Blair Voyvodic, the developer of an innovative product called the Body Braid. Blair, a former physician with a background in biophysics, shares the story of his career shift from academic research to providing person-focused service, leading to his work in a small village in Canada.
Blair's work was influenced by his experience with an organization that inspired the movie 'Patch Adams', which takes an unconventional approach to healthcare. The discussion then delves into Blair's personal struggle with hypermobility and how it led to the development of the Body Braid, a product that supports connective tissue and improved proprioception, and provides relief for those with hypermobility syndromes and Ehlers Danlos. Blair shares details about the Body Braid's design, use, and its benefits, alongside his experiences with the EDS Society and its role in promoting awareness.
Highlights of this episode include:
Blair's Journey and Inspiration from Patch AdamsBlair's Personal Experience with HypermobilityThe Birth of the Body BraidUnderstanding the Body BraidThe Impact of the Body Braid on HypermobilityThe Science Behind the Body BraidUnderstanding Collagen and its Role in HypermobilityUnderstanding Sensory Receptors in Connective TissueThe Importance of Tension in Connective TissuesExperiencing Gaslighting in Medical SettingsThe Role of the EDS Community in Understanding Connective Tissue DisordersMisconceptions and Confusions about HypermobilityThe Body Braid: A New Approach to Postural SupportUnderstanding the Body Braid: Usage and BenefitsThe Challenges and Solutions in Using the Body BraidThe Evolution and Adaptation of the Body BraidThe Body Braid as a Tool for Sensory Feedback and Movement ControlThe Body Braid: A Wearable Set of Movement BrakesThe Body Braid: A Tool for Everyone, Not Just the HypermobileConclusion: The Future of the Body Braid and Its Impact on Healthcare -
For this episode, Libby welcomes Savita Sandhu (Savvy) onto the Zebra Talks Podcast to discuss the impact of hypermobility syndromes on nutrition and daily living. They dive deep into topics like MCAS (Mast Cell Activation Syndrome), gut health, hydration, blood sugar regulation, and the role of nutrients in managing symptoms of hypermobility.
Savita is an accredited dietitian based in Australia. She shares her own experience with hypermobile Ehlers Danlos syndrome and emphasizes the importance of focusing on the basics: regular balanced meals, hydration, controlling blood sugar, and nervous system regulation in improving quality of life for those with hypermobility syndromes. She also sheds light on considerations such as the role specific nutritional deficiencies can play, and how gut health interacts with MCAS and POTS in hypermobility syndromes.
Highlights of this episode include:
Savita's Personal Journey with HypermobilitySavita's Professional Experience with Hypermobility ClientsDiscussion on Yoga and HypermobilityUnderstanding Gastrointestinal Issues in Hypermobility SyndromesThe role TMJ dysfunction plays in nutritionThe importance of meeting basic nutritional needs before trying to eliminate certain foodsAddressing Micronutrient DeficienciesImportance of Regular Balanced MealsManaging Mast Cell Activation Syndrome (MCAS)The Role of Liver in MCASFinal Thoughts and Conclusion -
In the episode, host Dr. Libby Hinsley discusses the intersection of neurodivergence and hypermobility with guest Iris Warchall, a physical therapist and an autistic self-advocate. They delve into the importance of recognizing the diversity of neurocognitive functioning styles in healthcare settings.
Iris shares her insight into how she became aware of her own neurodivergence and how this has influenced her approach toward treating her patients. She highlights the importance of accommodating the diverse needs of neurodivergent patients and presents some strategies to improve communication and caregiving in the therapeutic space. The conversation also addresses misconceptions and stigmas concerning autism, ADHD, and hypermobility.
Highlights of this episode include:
Iris's Personal Journey with Hypermobility and NeurodivergenceUnderstanding Autism and NeurodivergenceThe Connection Between Neurodivergence and HypermobilityThe Importance of Neurodiversity Affirming PracticeUnderstanding Neurodivergence TerminologyExploring the Overlap Between Neurodivergence and HypermobilityBest Practices for Working with Neurodivergent and Hypermobile PatientsFinal Thoughts and Resources -
The episode of Zebra Talks features a conversation with Trina Altman, an experienced yoga and pilates practitioner and teacher with training in modern movement science. Trina speaks about her own experiences with hypermobility and the benefits of strength training, addressing the misconceptions about this form of exercise and how it can benefit those living with hypermobility. She provides practical advice and examples of how to incorporate strength training into a wellness routine while addressing how to overcome potential challenges hypermobile people might face.
Some highlights of this episode include:
Trina's Early Life and Experience with HypermobilityTrina's Journey into Yoga and Pilates and eventually Strength TrainingTrina's Personal Life and Career ShiftsTrina's Love for Yoga and TeachingTransitioning Clients into WeightliftingChallenges and Strategies in Training Hypermobile ClientsSpecific Training Techniques for Hypermobile ClientsThe Importance of Lifting Heavy for Bendy PeopleTracking Progress and Adjusting WorkoutsThe Role of Perceived Exertion in TrainingOvercoming the Fear of Strength TrainingThe Role of Load in Strength TrainingThe Transition from Stability Training to Strength TrainingThe Benefits of Strength Training for HypermobilityThe Journey to Single Leg TransitionsThe Importance of Functional Movements in TrainingThe Impact of Strength Training on Daily LifeFinal Words of Encouragement and Tips for Bendy PeopleThe Potential of Plyometric Training -
In this episode of Zebra Talks, I get to chat with Jess Gregory, an Australian disability advocate living with hEDS. Through her work through Delicate Little Petal, Jess gives voice to those living with chronic health conditions such as hEDS that aren't well understood by the medical community. In this conversation, she shares insights about the unique challenges of navigating life with an invisible and dynamic disability.
Some highlights of this episode include:
Jess’s personal experience with hypermobility and advocacy work through Delicate Little PetalUnique challenges of having an invisible and dynamic disability The stigma many experience around using mobility aidsRisk of burnout when managing a chronic health conditionWhy self care must be tailored to each individual’s unique situationHow to resume your exercise routine after a flare up or illness Reasons bendy people love to stretch The movement and physical therapy approaches that have been most helpful for JessWhy manual therapy techniques can be so important for bendy peopleOur shared appreciation of dry needling as a manual therapy technique How our habit of pushing harder gets in the way of sustainable self care practicesThe importance of cultivating safety and agency for hypermobile patients Key characteristics of practitioners who cultivate a positive experience for bendy peopleThe importance of allowing space for grief as you navigate life in a bendy body -
In this week's episode of Zebra Talks, we will get into the "itchy" part of the terrible trifecta that so often impacts people with hypermobility syndromes. Lisa Sherman is back to take us on a deep dive into the world of mast cells: what they are, what they do, and why so many bendy people struggle with the multi-system affects of some seriously unruly mast cells.
Some highlights of this episode include:
Understanding mast cells and their role in the immune systemClarity on what mast cell activation syndrome (MCAS) is and is notSome theories on why so many bendy people have MCASCommon signs and symptoms of MCAS Why MCAS can be difficult to identifyThe diagnostic process and criteria for MCASHow MCAS interacts with the other pieces of the "terrible trifecta" Ways you can manage your "histamine bucket" and keep it emptying efficiently Why we should all focus first on the four basic pillars of healthCommon supplements that can support people with MCAS (always ask your doctor first!) -
For this episode of Zebra Talks, I got to chat with Jeannie DiBon about the unique needs of the bendy body when it comes to exercise. Jeannie's contributions to the hypermobility community have been huge for me and many other bendy people the world over, so we are fortunate to have her with us on Zebra Talks!
Some highlights of this episode include:
Jeannie's personal story about managing life with hEDS and regaining health after a low pointThe central role that meditation and daily rest have played in Jeannie's self careInsight into some of the key principles of Jeannie's Integral Movement MethodThe importance of starting any movement practice by cultivating a sense of safetyHow pain science informed Jeannie's to working with hypermobile clientsThe challenge of not having a whole lot of evidence on "best practices" for hypermobile exerciseThe importance of working towards heavier loading of tissues at the right timeWhy the standard approach to exercise doesn't usually work for bendy peopleTips on avoiding the common "boom and bust" exercise cycleWhy Jeannie is hopeful about the future of research into hypermobility syndromes -
In this episode, Libby talks with Victoria Daylor from the Norris Lab at the Medical University of South Carolina, where she and a team of researchers have identified candidate genes that may explain many cases of hypermobile EDS. Since their research is currently in the peer review process, Victoria can’t spill the beans. But she sheds light on what we know about the various subtypes of EDS and why this one has been so tough to nail down.
Some highlights of this episode include:
The prevalence of the various subtypes of EDSWhat we understand about the genetic basis for all EDS subtypes except hypermobile EDS Why you can’t just get a genetic blood test to diagnose hEDSHow the Norris lab is developing research models to help understand hEDS and HSDThe process that has led to discovering some potential genetic variants to explain hEDS What the scientific peer review process looks like and why it takes so longWhat a day in lab life is like for Victoria The summer internship program at the Norris LabSome other research projects happening at the Norris Lab including one related to tethered cord syndromeA questionnaire-based research project for anyone with an EDS or HSD diagnosis currently underwayA discussion about the differences and similarities between hEDS and HSDThe wide variety of symptom presentation among people with hEDS and HSDHow increased diagnosis rates can drive improvements in resource allocation for research -
In this episode, Libby talks with Lisa Sherman about the long journey to diagnosis that many people with HSD/hEDS undertake. They explore barriers to diagnosis, the pros and cons of diagnosis, why the medical system hasn’t done a great job identifying and treating this patient population, and how things might be changing.
Some key points discussed in this episode:
How Lisa began her journey of specializing in the treatment of people with hypermobility syndromes How Libby and Lisa started collaborating through their personal and professional overlapsHow common hypermobility syndromes are currently diagnosedThe nature of the HSD/hEDS “spectrum” as a spectrum of variety, in addition to severityThe history and limitations of the Beighton Scale as an assessment for generalized hypermobilityThe imperfect nature of current diagnostic criteria and how the diagnostic landscape is evolvingWhy HSD/hEDS present a confusing clinical picture for many medical practitionersSome systemic barriers within the medical system that prevent early diagnosis and treatment for this patient populationThe unfortunate experience of medical gaslighting A silver lining of the covid crisis for people with complex chronic conditions What it’s like wandering in the wasteland of non-diagnosisWhy medical appointments are often so anxiety-provoking for bendy peopleThe validation and empowered action that can stem from diagnosis How having a clear diagnosis can help reduce anxiety and support nervous system regulationThe overwhelm that can stem from diagnosisHow a good working hypothesis can be just as good as a diagnosis for some peopleHow focusing on the basic pillars of overall health is always a good place to start -- appropriate movement, nervous system regulation, nutrition, and sleep. - Mostrar mais
