Hacking Hypermobility

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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

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

References

https://www.rarediseaseday.org/what-is-rare-disease-day/

Schulze, Marcel et al. “Robust perceptual-load-dependent audiovisual integration in adult ADHD.” European archives of psychiatry and clinical neuroscience vol. 272,8 (2022): 1443-1451. doi:10.1007/s00406-022-01401-z

Alexander Schneidt, Aiste Jusyte, Karsten Rauss, Michael Schönenberg, Distraction by salient stimuli in adults with attention-deficit/hyperactivity disorder: Evidence for the role of task difficulty in bottom-up and top-down processing, Cortex, Volume 101, 2018, Pages 206-220, ISSN 0010-9452

https://www.simplypsychology.org/bottom-up-processing.html

https://www.additudemag.com/adhd-brain-prefrontal-cortex-attention-emotions/?srsltid=AfmBOooUMT3xWbHqqlzRZVm76WHKLyQ-bB70pGOdnd_zXB4dWoSr2SYv

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, emotional well-being, chronic illness, physical therapy, pain management, accessibility, alexithymia

Reference

Hogeveen, Jeremy, and Jordan Grafman. “Alexithymia.” Handbook of clinical neurology vol. 183 (2021): 47-62. doi:10.1016/B978-0-12-822290-4.00004-9

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 listed and linked here. There are only a handful of tangents…

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 joining us, and if you feel so inclined to comment, share, rate and subscribe, we would absolutely appreciate it! All of those things help other Bendy Baddies find us, and we would be thankful for your help.

Episode Chapters

(00:00) Intro

(02:24) Medical Disclaimer

(02:47) What is Pediatric Joint Hypermobility Syndrome

(05:44) TL;DR of Hypermobility in Kids

(12:35) What Organizations Are Working On

(14:33) hEDS to PJHS Key Changes

(18:03) Positives to New Pediatric Framework

(22:14) Critical Discussion of the Changes

(24:05) New PJHS Diagnostic Process)

(34:00) Closing

Show notes for this episode are available here.

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 disorder (such as the Ehlers-Danlos Syndromes), but haven't started on your journey yet, Luna and Shelli give an "EDS Overview" and cover the diagnostic process in Season 1 if you want to learn more about it.