2.2 Year in Review 2023 - Hypermobility Edition

2.2 Year in Review 2023 - Hypermobility Edition

The Bendy Mommas continue the second season with a review of Zebra news from 2023. Luna and Shelli’s wrap-up has all the news you missed pertinent to Hypermobility and the Ehlers-Danlos Syndromes.

If you have any questions, comments, or suggestions for future episode topics, please send us a message (voice, audio, or video) to tiffany@hackinghypermobility.com or info@hackinghypermobility.com

Be sure to give us permission to use your likeness and if you want us to use your name, photo, or voice.

References

Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes - ScienceDirect

Multiple Sustainable Benefits of a Rehabilitation Program in Therapeutic Management of Hypermobile Ehlers-Danlos Syndrome: A Prospective and Controlled Study at Short- and Medium-Term - ScienceDirect

Full article: Pilot study of an online-delivered mindfulness meditation in Ehlers-Danlos syndrome (hEDS): effect on quality-of-life and participant lived experience

Research article Folate-dependent hypermobility syndrome: A proposed mechanism and diagnosis

A novel mutation in collagen transport protein, MIA3 gene, detected in a patient with clinical symptoms of Ehlers–Danlos hypermobile syndrome

Ehlers-Danlos Syndrome is Associated with Increased Rates of Adjacent Segment Disease Following TLIF: A Propensity Matched Study - ScienceDirect

Sacroiliac joint fusion in patients with Ehlers Danlos Syndrome: A case series - ScienceDirect

Outcomes Following Anterior Cervical Discectomy and Fusion in Patients With Ehlers-Danlos Syndrome - Jialun Chi, Jon Raso, Vaibhav Tadepalli, Lawal Labaran, Eunha Oh, Jesse Wang, Francis H. Shen, Xudong Li, 2023

Mike and Sofia Segal Family Foundation pledge $6.7 million to advance research - The Ehlers Danlos Society

$2.375 million pledge from InVitro Cell Research, LLC (ICR) for research in hypermobile Ehlers-Danlos syndrome (hEDS)

EDS Maternity Co-created Tools | hEDS Together

2023 Diagnostic Framework for Pediatric Joint Hypermobility - The Ehlers Danlos Society

Jaksot(43)

2.16 Why Get Diagnosed? - Part Two

2.16 Why Get Diagnosed? - Part Two

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2.15 Why Get Diagnosed?

2.15 Why Get Diagnosed?

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...

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2.14 - Hypermobile Dudes Part 3: The Conclusion

2.14 - Hypermobile Dudes Part 3: The Conclusion

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 Ehle...

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2.13 - Patient Advocacy & Insurance

2.13 - Patient Advocacy & Insurance

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, e...

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2.12 - Hypermobile Dudes Part 2: An Interview Panel With Three Men With hEDS

2.12 - Hypermobile Dudes Part 2: An Interview Panel With Three Men With hEDS

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...

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2.11 - The Conversation With a Patient Advocate, Part 3

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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 ...

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2.10 - Hypermobile Dudes Part 1: An Interview Panel With Three Men With hEDS

2.10 - Hypermobile Dudes Part 1: An Interview Panel With Three Men With hEDS

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 tal...

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2.9 - The Conversation With a Patient Advocate Continues

2.9 - The Conversation With a Patient Advocate Continues

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 "...

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