Hacking Hypermobility

Hacking Hypermobility

By Two Bendy Mommas

Hi! We’re Luna and Shelli, also known as The Two Bendy Mommas. We talk about the lived experience of those affected by the inherited connective tissue disorders, and its intersection with neurodiversity, elevating marginalized and intersectional voices for our community.

Please note: Hacking Hypermobility is produced in its entirety by three disabled women in various stages of life and parenting adventures. New episodes are typically released biweekly from January through July.
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Currently playing episode

2.8 - What Is a Patient Advocate, and Do You Need One?

Hacking HypermobilityMay 09, 2024
00:00
26:53
3.7 Help, I'm Alive: F is for Fuuuuuuuu
Apr 26, 202538:01
3.6 Help I'm Alive: Dysfunction Junction

3.6 Help I'm Alive: Dysfunction Junction

Keywords

brain, dysautonomia, executive functioning, personal journey, daily challenges



Apr 12, 202511:11
3.5 Help, I'm Alive: D is for Dysplasia
Mar 29, 202539:57
3.4 Help, I'm Alive: It's Complicated
Mar 15, 202550:01
3.3 Help, I'm Alive: Bottoms Up

3.3 Help, I'm Alive: Bottoms Up

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

Mar 01, 202519:45
3.2 Help, I'm Alive: Alexa Tamia

3.2 Help, I'm Alive: Alexa Tamia

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


Feb 15, 202530:18
3.1 The Two Bendy Momma's Third Annual Zebra Year in Review

3.1 The Two Bendy Momma's Third Annual Zebra Year in Review

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…

Feb 01, 202547:09
A Mysterious New Year

A Mysterious New Year

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


Jan 01, 202512:45
2.17 Pediatric Hypermobility

2.17 Pediatric Hypermobility

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.

Aug 01, 202438:22
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 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. 


Jul 18, 202444:55
2.15 Why Get Diagnosed?
Jul 11, 202401:18:11
2.14 - Hypermobile Dudes Part 3: The Conclusion
Jun 27, 202446:20
2.13 - Patient Advocacy & Insurance
Jun 13, 202426:47
2.12 - Hypermobile Dudes Part 2: An Interview Panel With Three Men With hEDS
May 30, 202443:31
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 important to patients, especially "complex" ones like those of us with EDS, neurodivergence, and other co-morbidities. 

May 23, 202437:35
2.10 - Hypermobile Dudes Part 1: An Interview Panel With Three Men With hEDS
May 23, 202454:08
2.9 - The Conversation With a Patient Advocate Continues
May 16, 202435:12
2.8 - What Is a Patient Advocate, and Do You Need One?

2.8 - What Is a Patient Advocate, and Do You Need One?

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.


May 09, 202426:53
2.7 April, Autism, and Intersectionality - Part Two

2.7 April, Autism, and Intersectionality - Part Two

Meet Jesenia - Creator of Neurospicy Networking

Apr 25, 202455:56
2.6 April, Autism, and Intersectionality

2.6 April, Autism, and Intersectionality

Filmed on location at the Omni Nashville on November 10, 2023

Contact LyricalShkspr at lyricalshkspr@gmail.com and purchase her books here: Linktr.ee/lyricalshkspr

Apr 11, 202452:31
2.5 All the Love for Charm City

2.5 All the Love for Charm City

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

Mar 28, 202402:34
2.4 Disability Rights and TikTok
Mar 14, 202411:11
2.3 Year in Review 2023 - Neurodivergent Edition
Feb 29, 202438:11
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

Feb 15, 202431:05
2.1 The One Where We Come Back

2.1 The One Where We Come Back

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

Feb 01, 202401:25:25
1.11 The One With The Crossover
May 17, 202350:54
1.10 Year in Review 2022 - Zebra Edition

1.10 Year in Review 2022 - Zebra Edition

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!

-----

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 info@hackinghypermobility.com. Be sure to give us permission to use your likeness and if you want us to use your name or not.

-----

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

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

Feb 02, 202303:03:37
1.09 Let's have a little fun

1.09 Let's have a little fun

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

Jan 29, 202328:02
1.08 A Conversation with a Late Diagnosed Woman, Interview 2

1.08 A Conversation with a Late Diagnosed Woman, Interview 2

The Bendy Mommas continue their conversation on late diagnosis.

Resources and References:
  1. “Neurodivergent: What is It?” Cleveland Clinic Health Library 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. Front Psychiatry. 2022 Feb 2;12:786916. doi: 10.3389/fpsyt.2021.786916. PMID: 35185636; PMCID: PMC8847158. 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. 2022 Feb 8;12:803334. doi: 10.3389/fpsyt.2021.803334. PMID: 35211037; PMCID: PMC8861852. 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: A cross-sectional case control comparison. J Psychiatr Res. 2021 Nov;143:334-340. doi: 10.1016/j.jpsychires.2021.07.006. Epub 2021 Jul 5. PMID: 34560594. 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. 2022 Feb 7;12:794516. doi: 10.3389/fpsyt.2021.794516. PMID: 35250650; PMCID: PMC8892379. 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/
Jan 23, 202301:07:23
1.07 A Conversation with a Late Diagnosed Woman, Interview 1

1.07 A Conversation with a Late Diagnosed Woman, Interview 1

A Conversation with a Late Diagnosed Woman, Interview 1

Summary:

Join us for a more casual conversation to get to know your hosts of the Hacking Hypermobility Podcast. Luna and Shelli sit down to talk about their own experiences with neurodivergence.

Resources and References:
  1. “Neurodivergent: What is It?” Cleveland Clinic Health Library 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. Front Psychiatry. 2022 Feb 2;12:786916. doi: 10.3389/fpsyt.2021.786916. PMID: 35185636; PMCID: PMC8847158. 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. 2022 Feb 8;12:803334. doi: 10.3389/fpsyt.2021.803334. PMID: 35211037; PMCID: PMC8861852. 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: A cross-sectional case control comparison. J Psychiatr Res. 2021 Nov;143:334-340. doi: 10.1016/j.jpsychires.2021.07.006. Epub 2021 Jul 5. PMID: 34560594. 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. 2022 Feb 7;12:794516. doi: 10.3389/fpsyt.2021.794516. PMID: 35250650; PMCID: PMC8892379. 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/
Jan 02, 202301:16:57
1.06 Hypermobility Assessment - Diagnostic Checklist Criterion 3

1.06 Hypermobility Assessment - Diagnostic Checklist Criterion 3

In this episode, the Bendy Mommas discuss the 3rd and final criterion on the hEDS diagnostic checklist which includes 3 key points that exclude other diagnoses.

Dec 16, 202228:51
1.05 Hypermobility Assessment: Criterion 2 of the 2017 Diagnostic Checklist

1.05 Hypermobility Assessment: Criterion 2 of the 2017 Diagnostic Checklist

Show Notes Episode 1.05

Diagnosis of Hypermobility / Ehlers-Danlos Syndromes:

Criterion 2-3

Resources mentioned in this episode are listed and linked here.

Nov 30, 202201:19:20
1.04 Hypermobility Assessment: All About Beighton
Oct 10, 202201:20:47
1.03 Barriers to Diagnosis and Care

1.03 Barriers to Diagnosis and Care

In this episode we discuss the barriers you may come across during your  diagnostic journey and understanding the cause of your hypermobility disorder. Some of these barriers are more internal, while others are external to you, therefore making them even more difficult to address.

Part 1 - Luna and Shelli discuss the internal and external barriers

Parts 2 & 3 - Luna and Shelli share the accommodations and hacks they use to make sure they are practicing regular self-care.

Sep 20, 202202:31:48
1.02 Overview of the Diagnostic Process
Aug 19, 202201:50:14
1.01 Introducing the Hacking Hypermobility Podcast
Aug 01, 202201:19:29