Hacking Hypermobility

The Bendy Mommas are still on Spring Break and will return in two weeks with new episodes!

In this mini episode, The Bendy Mommas discuss why TikTok is important for building communities.

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The Bendy Mommas discuss the news about neurodivergence from the year 2023.  Luna and Shelli’s 2023 wrap-up has all the news you missed pertinent to ADHD and ASD. If you have any questions or comments for future episodes please send us a message (voice, audio, or video) to [email protected]

Be sure to give us permission to use your name

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.

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

Oh hi! The Bendy Mommas are back and we have lots of exciting things in store for 2024!

***A Very Special Episode***

Enjoy this little treat while the Two Bendy Mommas work on their plan for Season Two! Have an idea? Send us an email - [email protected]

Many thanks to Dr. Rebecca Land at Kennedy Krieger's Center for Autism and Related Disorders. For direct access to the interview included in this episode, please click https://vimeo.com/813334001 For more information about Dr. Landa and Kennedy Krieger, please visit https://www.kennedykrieger.org/patient-care/faculty-staff/rebecca-landa

NOTE: Hacking Hypermobility UNMASKED - We opted to leave all of our stumbling, umms, and off-topic squirrelling in this episode. As a result, the episode is 3 hours long!  This episode is also the season one finale. The Bendy Mommas are going to enjoy a hiatus for a little bit before we buckle down and solidify plans for season two. Keep up with us on our socials in the mean time!

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The Bendy Mommas close out the season with a recap of the Zebra news from 2022.  Luna and Shelli’s 2022 wrap-up has all the news you missed pertinent to Hypermobility and Neurodivergence including all the new medical research in the inherited connective tissue disorders including the Ehlers-Danlos Syndromes, Joint Hypermobility Syndrome, Autism, ADHD, genetics, CRISPR gene editing, therapeutics, treatments, community and even some celebrity news.

We appreciate YOU, our listeners so very much. Thank you for a successful first season!

If you have any questions or comments for future episodes please send us a message (voice, audio, or video) at [email protected]. Be sure to give us permission to use your likeness and if you want us to use your name or not.

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You may find all the resources on our website under the blog: 

https://www.hackinghypermobility.com/post/2022-year-in-review-of-zebra-news

Join the Two Bendy Mommas as they answer some fun questions. Shelli's daughter joins in the fun to play MC. 

The Bendy Mommas continue their conversation on late diagnosis.

See notes from Episode 7!

Luna and Shelli sit down to talk about their own experiences with neurodivergence.

Resources and References:

1. “Neurodivergent: What is It?” https://my.clevelandclinic.org/health/symptoms/23154-neurodivergent
2. Csecs JLL, Iodice V, Rae CL, Brooke A, Simmons R, Quadt L, Savage GK, Dowell NG, Prowse F, Themelis K, Mathias CJ, Critchley HD, Eccles JA. Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain. https://pubmed.ncbi.nlm.nih.gov/35185636/
3. Glans MR, Thelin N, Humble MB, Elwin M, Bejerot S. The Relationship Between Generalised Joint Hypermobility and Autism Spectrum Disorder in Adults: A Large, Cross-Sectional, Case Control Comparison. Front Psychiatry. https://pubmed.ncbi.nlm.nih.gov/35211037/
4. Glans M, Thelin N, Humble MB, Elwin M, Bejerot S. Association between adult attention-deficit hyperactivity disorder and generalised joint hypermobility: https://pubmed.ncbi.nlm.nih.gov/34560594/
5. Zoccante L, Ciceri ML, Gozzi LA, Gennaro GD, Zerman N. The "Connectivome Theory": A New Model to Understand Autism Spectrum Disorders. Front Psychiatry. https://pubmed.ncbi.nlm.nih.gov/35250650/ , https://www.frontiersin.org/articles/10.3389/fpsyt.2021.794516/full
6. Norris Labs EDS Resources: https://www.thenorrislab.com/research/ehlers-danlos-syndrome/eds-resources
7. Harvey Blume, "Neurodiversity: On the neurological underpinnings of geekdom" The Atlantic, September 1998. https://web.mit.edu/comm-forum/legacy/papers/blume.html https://www.theatlantic.com/magazine/archive/1998/09/neurodiversity/305909/
8. An interview with Judy Singer: http://www.myspectrumsuite.com/meet-judy-singer/
9. Sonny Jane Wise' website with helpful infographics and resources "The Lived Experience Educator" https://livedexperienceeducator.com/freestuff, TikTok: https://www.tiktok.com/@livedexperienceeducator?_t=8YHZdr0g03a&_r=1
10. Essay by Ketil Slagstad, "Asperger, the Nazis and the children – the history of the birth of a diagnosis" https://tidsskriftet.no/en/2019/05/essay/asperger-nazis-and-children-history-birth-diagnosis
11. The Curable App: https://www.curablehealth.com/