Zebra Talks: Living Your Best Bendy Life

Pelvic Health Challenges in the Hypermobility Community

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

Drop it Like it's POTS with Emily Rich, OT

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

The Body Braid and its Benefits for Hypermobility Syndromes

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 Adams
Blair's Personal Experience with Hypermobility
The Birth of the Body Braid
Understanding the Body Braid
The Impact of the Body Braid on Hypermobility
The Science Behind the Body Braid
Understanding Collagen and its Role in Hypermobility
Understanding Sensory Receptors in Connective Tissue
The Importance of Tension in Connective Tissues
Experiencing Gaslighting in Medical Settings
The Role of the EDS Community in Understanding Connective Tissue Disorders
Misconceptions and Confusions about Hypermobility
The Body Braid: A New Approach to Postural Support
Understanding the Body Braid: Usage and Benefits
The Challenges and Solutions in Using the Body Braid
The Evolution and Adaptation of the Body Braid
The Body Braid as a Tool for Sensory Feedback and Movement Control
The Body Braid: A Wearable Set of Movement Brakes
The Body Braid: A Tool for Everyone, Not Just the Hypermobile
Conclusion: The Future of the Body Braid and Its Impact on Healthcare

Nutrition Management for Hypermobility Syndromes with Savita Sandhu

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 Hypermobility
Savita's Professional Experience with Hypermobility Clients
Discussion on Yoga and Hypermobility
Understanding Gastrointestinal Issues in Hypermobility Syndromes
The role TMJ dysfunction plays in nutrition
The importance of meeting basic nutritional needs before trying to eliminate certain foods
Addressing Micronutrient Deficiencies
Importance of Regular Balanced Meals
Managing Mast Cell Activation Syndrome (MCAS)
The Role of Liver in MCAS
Final Thoughts and Conclusion

Neurodivergence and Hypermobility

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 Neurodivergence
Understanding Autism and Neurodivergence
The Connection Between Neurodivergence and Hypermobility
The Importance of Neurodiversity Affirming Practice
Understanding Neurodivergence Terminology
Exploring the Overlap Between Neurodivergence and Hypermobility
Best Practices for Working with Neurodivergent and Hypermobile Patients
Final Thoughts and Resources

Strength Training for Hypermobility: A Conversation with Trina Altman

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 Hypermobility
Trina's Journey into Yoga and Pilates and eventually Strength Training
Trina's Personal Life and Career Shifts
Trina's Love for Yoga and Teaching
Transitioning Clients into Weightlifting
Challenges and Strategies in Training Hypermobile Clients
Specific Training Techniques for Hypermobile Clients
The Importance of Lifting Heavy for Bendy People
Tracking Progress and Adjusting Workouts
The Role of Perceived Exertion in Training
Overcoming the Fear of Strength Training
The Role of Load in Strength Training
The Transition from Stability Training to Strength Training
The Benefits of Strength Training for Hypermobility
The Journey to Single Leg Transitions
The Importance of Functional Movements in Training
The Impact of Strength Training on Daily Life
Final Words of Encouragement and Tips for Bendy People
The Potential of Plyometric Training

Navigating Invisible and Dynamic Disability

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 Petal
Unique challenges of having an invisible and dynamic disability 
The stigma many experience around using mobility aids
Risk of burnout when managing a chronic health condition
Why self care must be tailored to each individual’s unique situation
How 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 Jess
Why manual therapy techniques can be so important for bendy people
Our shared appreciation of dry needling as a manual therapy technique 
How our habit of pushing harder gets in the way of sustainable self care practices
The importance of cultivating safety and agency for hypermobile patients 
Key characteristics of practitioners who cultivate a positive experience for bendy people
The importance of allowing space for grief as you navigate life in a bendy body

MCAS: When Good Cells Turn Bad

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 system
Clarity on what mast cell activation syndrome (MCAS) is and is not
Some theories on why so many bendy people have MCAS
Common signs and symptoms of MCAS 
Why MCAS can be difficult to identify
The diagnostic process and criteria for MCAS
How 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 health
Common supplements that can support people with MCAS (always ask your doctor first!)

Bendy Bodies Need a Unique Approach to Exercise

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 point
The central role that meditation and daily rest have played in Jeannie's self care
Insight into some of the key principles of Jeannie's Integral Movement Method
The importance of starting any movement practice by cultivating a sense of safety
How pain science informed Jeannie's to working with hypermobile clients
The challenge of not having a whole lot of evidence on "best practices" for hypermobile exercise
The importance of working towards heavier loading of tissues at the right time
Why the standard approach to exercise doesn't usually work for bendy people
Tips on avoiding the common "boom and bust" exercise cycle
Why Jeannie is hopeful about the future of research into hypermobility syndromes 

The Genetic Mystery of Hypermobile EDS

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 EDS
What 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 hEDS
How the Norris lab is developing research models to help understand hEDS and HSD
The 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 long
What a day in lab life is like for Victoria 
The summer internship program at the Norris Lab
Some other research projects happening at the Norris Lab including one related to tethered cord syndrome
A questionnaire-based research project for anyone with an EDS or HSD diagnosis currently underway
A discussion about the differences and similarities between hEDS and HSD
The wide variety of symptom presentation among people with hEDS and HSD
How increased diagnosis rates can drive improvements in resource allocation for research