Keywords

hypermobility, EDS, Integral Movement Method, Zebra Club, chronic pain, movement therapy, nervous system regulation, healthcare education, community support, patient advocacy

Summary

In this episode of the Hacking Hypermobility, Luna and Shelli chat with Jeannie Di Bon, a movement therapist and founder of The Zebra Club. They discuss the challenges faced by individuals with Ehlers-Danlos Syndrome (EDS) and hypermobility, including personal experiences with diagnosis, the importance of community support, and the Integral Movement Method (IMM) developed by Jeannie.

The conversation emphasizes the need for better education among healthcare providers, the significance of nervous system regulation, and the role of the Zebra Club app in providing resources and support for the hypermobile community.

Full show notes available here.

Takeaways

• Jeannie Di Bon developed the IMM to help those with EDS and chronic pain.
• The Zebra Club app offers community, movement classes, and educational resources.
• Nervous system regulation is crucial before engaging in physical activity.
• Personal experiences with diagnosis can shape professional practices.
• The importance of individualized approaches in movement therapy for hypermobile patients.
• Community support is vital for those living with chronic conditions.
• Education for healthcare providers about EDS is lacking and needs improvement.
• Gentle, gradual movement is more effective than high-intensity workouts for hypermobile individuals.
• The IMM is evidence-based and focuses on integrating movement with mindfulness.
• Awareness and advocacy for EDS and hypermobility are essential for improving patient care.

Resources & Links

Full Show Notes Available Here!

Jeannie's Website: https://jeanniedibon.com

The Zebra Club App: https://www.thezebra.club

Get Jeannie's Book, Hypermobility Without Tears

Bookshop.org

Amazon (US)

Amazon (UK)

Shelli explores the personal experiences of multiple surgeries, focusing on the scheduling, preparation, recovery, and interactions with healthcare professionals.Shelli also shares insights into the challenges faced during the surgical process, including anesthesia, pain management, and the importance of patient advocacy in navigating medical care.

Tiffany shares some exciting news for mid-atlantic zebras

Luna is the jokester in this episode!

Keywords

surgery, recovery, anesthesia, patient experience, healthcare, hand surgery, hip surgery, medical interactions, patient advocacy, health management

Takeaways

• Surgery scheduling can be influenced by personal circumstances.
• Experiences with different types of surgeries can vary significantly.
• Preparation for surgery includes managing anxiety and ensuring hydration.
• Post-surgery recovery involves pain management and mobility exercises.
• Follow-up care is crucial for monitoring healing and addressing complications.
• Interactions with healthcare professionals can impact the overall experience.
• Patient advocacy is essential in ensuring proper care and communication.
• The importance of personal comfort items during surgery, like grippy socks.
• Understanding the role of anesthesia in the surgical process is vital.
• Ongoing challenges can arise even after successful surgeries.

Links

UVA EDS Clinic Press Release - https://news.med.virginia.edu/clinical/uva-health-launching-comprehensive-national-program-for-connective-tissue-disorders/

In this episode, Tiffany warns about having surgery on both hands on the same day.

Does anyone actually read these descriptions? If you're reading this, not on podcast staff, and have the spoons, leave us a review or comment and tell us about this silly episode description!

Oopsie!

Shelli's YouTube

Keywords

brain, dysautonomia, executive functioning, personal journey, daily challenges

If you are able, Shelli recommends watching this episode

Summary

In this episode, Luna discusses a groundbreaking study linking joint hypermobility and anxiety, highlighting the neurological underpinnings of these conditions.

Shelli discusses aEDS, hip dysplasia, and shares more candid content from sessions with her physical therapist.

Keywords

hypermobility, anxiety, medical gaslighting, Ehlers-Danlos syndrome, dysplasia, neurological research, chronic pain, personal experiences, recovery, support

References

Kamboureli, Christina Niki; Rae, Charlotte; Gould Van Praag, Cassandra; Harrison, Neil A; Garfinkel, Sarah N; Critchley, Hugo; et al. (2025). Neural processes linking joint hypermobility and anxiety: key roles for the amygdala and insular cortex. University of Sussex. Journal contribution.

EDS Society info on aEDS

aEDS VUS info

Links to specific assistive devices along with phots will be posted soon - it's Shelli's birthday weekend and the weather is looking good!

C is for Complicated

In this episode, Shelli shares candid, unscripted video diaries that cover the time period leading up to and one week following hip surgery in September 2024.

Content Warning - at around 44:44 there is video footage of bandage removal and several images of my incisions

Keywords

Ehlers-Danlos Syndrome, Hypermobility, Chronic Pain, Surgery, Recovery, Personal Health, Medical Journey, Patient Experience, Health Awareness, Dysautonomia

References:

Complicated