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: 

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

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

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

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

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

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

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

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

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