Hacking Hypermobility

Dr. Akilah Cadet is the founder and CEO of Change Cadet, an organizational development consulting firm. As a Forbes Next 1000 entrepreneur, her work is behind some of the biggest brands that you use every day. Dismantling white supremacy through storytelling is at the core of her work as a leader, speaker, creative director, producer, writer and editor. Dr. Cadet is the co-owner of the Oakland Roo...

Summary It's our Third Birthday! Yay! Celebrate by taking a quick look back at some unseen footage from July 2022. Later in the episode, Luna and Shelli continue their conversation with Dr. Tina Wang. Keywords hypermobility, Ehlers-Danlos syndrome, community support, advocacy, personal stories, awareness, medical care, mental health, holistic approaches, podcasting Takeaways Community support is c...

Summary In this episode, Luna and Shelli interview Dr. Tina Wang, a leading expert in fascia and hypermobility disorders. They discuss the importance of fascia in the body, its role in conditions like Ehlers-Danlos Syndrome, and the challenges faced in diagnosing and treating these disorders. Dr. Wang shares insights from her research, the significance of holistic care, and the need for better edu...

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...

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-atlant...

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!

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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-D...

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 Jou...

B is for Bottoms Up! In this episode, Shelli discusses psychological concepts like bottom-up and top-down processing and reflects on family dynamics and support during her recovery. The conversation also touches on the election process. Keywords Rare Disease Day, orthopedic surgery, bottom-up processing, top-down processing, medical appointments, family support, therapy, election process Reference...

Summary In this season, Shelli shares her experiences following orthopedic surgeries, focusing on recovery, emotional well-being, and the challenges faced by those with neurodivergence. Today's conversation explores the concept of alexithymia and the importance of understanding how one's body and mind work together. Keywords Ehlers Danlos, surgery recovery, neurodivergence, interoception,...

Happy International Zebra Day from the Hacking Hypermobility Podcast! On this episode, we launch Season 3 with a retrospective of 2024 highlighting topics pertinent to the Ehlers-Danlos Syndromes and Hypermobility. Your hosts Shelli and Luna discuss the news from 2024 including the latest medical breakthroughs, research updates, and community stories. References mentioned in this episode are liste...

Surprise! The Bendy Mommas have a little treat for you to welcome 2025. Good riddance, 2024! New episodes resume on International Zebra Day, January 31

Welcome back to Hacking Hypermobility! This week's episode is all about pediatric hypermobility. Shelli and Luna are diving into how hypermobility impacts children and teenagers, the pediatric diagnostic process, and the updated diagnostic criteria that was released in May 2023. Also, a quick announcement: You can now support the show directly through our website here ! Thank you so much for j...

On this week's episode, the Two Bendy Mommas continue to discuss why they think it’s a smart idea to use your spoons to get diagnosed. They discuss some of the the benefits of going through the diagnostic journey, why diagnosis actually matters, and some personal insight to how their diagnosis has impacted their lives (and their Zebra offspring!). If you suspect an inherited connective disorde...

On this week's episode, the Two Bendy Mommas discuss why they think it’s a smart idea to use your spoons to get diagnosed. They discuss some of the the benefits of going through the diagnostic journey, why diagnosis actually matters, and some personal insight to how their diagnosis has impacted their lives (and their Zebra offspring!). If you suspect an inherited connective disorder (such as t...

This week, Luna, Shelli, and our special guest panel members Brandon Buccieri (@susanpossibly), Doug Kremer (@DougKrem) and Bryan Jewell (@kindaspoony) wrap up their discussion on how Hypermobile Ehlers-Danlos Syndrome affects them. Luna also shares some very exciting and highly anticipated news from the Norris Lab at MUSC regarding a newly released hEDS research report. Find the full show notes f...

We're back this week with the final segment of our interview with Megan Karanfil to dive deeper into her role as a patient advocate, how advocates can help, and why they're so important to patients, especially "complex" ones like those of us with EDS, neurodivergence, and other co-morbidities. Full show notes are available here .

The Bendy Mommas continue to look into understanding the intersectionality of Hypermobility by talking to some Bendy Dudes. We gathered a panel of men with Hypermobile Ehlers-Danlos Syndrome (hEDS) to discuss their experiences with hypermobility. Here's part two of the men's interview panel! Full show notes available here .

Two episodes in one day? Why not? We're back this week with Part 3 of our interview with Megan Karanfil to dive deeper into her role as a patient advocate, how advocates can help, and why they're so important to patients, especially "complex" ones like those of us with EDS, neurodivergence, and other co-morbidities. 

On this week's episode, Luna and Shelli discuss how Hypermobile Ehlers-Danlos Syndrome affects an often underrepresented community within our Zebra Herd: Men. In our first-ever panel interview, we talk with Brandon Bucceiri, Doug Kremer, and Bryan Jewell about their lived experiences with Ehlers-Danlos Syndrome. Our guests discuss how hEDS affects them, their diagnosis stories, and how they na...

We're back this week with Part 2 of our interview with Megan Karanfil to dive deeper into her role as a patient advocate, how advocates can help, and why they're so important to patients, especially "complex" ones like those of us with EDS, neurodivergence, and other co-morbidities.  Full show notes are available here .

In this week's episode, Shelli and Luna interview Megan Karanfil, a board certified Patient Advocate. They discuss what a patient advocate is, what resources an advocate can offer, and the role a patient advocate can play in helping patients navigate their healthcare.