Zebra Talks: Living Your Best Bendy Life

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 

Journey to Diagnosis with Lisa Sherman

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 overlaps
How common hypermobility syndromes are currently diagnosed
The nature of the HSD/hEDS “spectrum” as a spectrum of variety, in addition to severity
The history and limitations of the Beighton Scale as an assessment for generalized hypermobility
The imperfect nature of current diagnostic criteria and how the diagnostic landscape is evolving
Why HSD/hEDS present a confusing clinical picture for many medical practitioners
Some systemic barriers within the medical system that prevent early diagnosis and treatment for this patient population
The 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-diagnosis
Why medical appointments are often so anxiety-provoking for bendy people
The validation and empowered action that can stem from diagnosis 
How having a clear diagnosis can help reduce anxiety and support nervous system regulation
The overwhelm that can stem from diagnosis
How a good working hypothesis can be just as good as a diagnosis for some people
How focusing on the basic pillars of overall health is always a good place to start -- appropriate movement, nervous system regulation, nutrition, and sleep. 

Bendy People Have Weird Fascia

Connective tissue or fascia plays a major role in the differences between bendy people and their non-bendy counterparts. But what even is fascia and why does it affect so many systems of the body? In this episode, Libby & Dr. Tina Wang discuss her fascinating research into the qualities of fascial tissue in people with hypermobility syndromes. She provides insights into why bendy people’s fascial tissue is different from “standard issue” fascia, how this impacts force transfer and structural support, and finally, why bendy people benefit so much from manual therapy techniques.  
 
The important structural and sensory roles fascia plays in the body
Why the term 'fascia' is difficult to define
Why bendy people display decreased force output and how that relates to fascia differences
Why bendy people’s fascial layers don’t glide as well as standard issue fascia
The “diagnostic odyssey” that so many bendy people experience
Systemic barriers to high quality medical care for people with HSD/hEDS
How movement practices to help our fascia make positive adaptations and function better
Why manual therapy techniques such as dry needling and myofascial release are often so effective for people with HSD/hEDS.
Reasons to be hopeful about all the patient experts and practitioners working to improve quality of care.

Is Yoga Bad for Bendy People?

Ever been told that hypermobile people shouldn’t practice yoga? In this episode Libby shares how different ways to practice yoga can be helpful or harmful for bendy people.
Episode highlights include:
Hypermobility basics – what does it actually mean to be bendy?
Unique needs for bendy people in Asana practice
Alternatives to passive stretching that work better for bendy people
What yoga practice injuries are telling us
An overview of Libby’s book; Yoga for Bendy People
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