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

Episoder(43)

2.16 Why Get Diagnosed? - Part Two

2.16 Why Get Diagnosed? - Part Two

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 diagno...

18 Jul 202444min

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...

11 Jul 20241h 18min

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...

27 Jun 202446min

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...

13 Jun 202426min

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...

30 Mai 202443min

2.11 - The Conversation With a Patient Advocate, Part 3

2.11 - The Conversation With a Patient Advocate, Part 3

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 ...

23 Mai 202437min

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...

23 Mai 202454min

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 "...

16 Mai 202435min

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