
Hacking Hypermobility
By Two Bendy Mommas
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.



3.6 Help I'm Alive: Dysfunction Junction
Keywords
brain, dysautonomia, executive functioning, personal journey, daily challenges

3.5 Help, I'm Alive: D is for Dysplasia
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.
Links to specific assistive devices along with phots will be posted soon - it's Shelli's birthday weekend and the weather is looking good!

3.4 Help, I'm Alive: It's Complicated

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

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

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…

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

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.

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.

2.15 Why Get Diagnosed?

2.14 - Hypermobile Dudes Part 3: The Conclusion

2.13 - Patient Advocacy & Insurance

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

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.

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 talk with Brandon Bucceiri, Doug Kremer, and Bryan Jewell about their lived experiences with Ehlers-Danlos Syndrome. Our guests discuss how hEDS affects them, their diagnosis stories, and how they navigate the medical field as Zebras assigned male at birth.
Show notes are available here.

2.9 - The Conversation With a Patient Advocate Continues

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.

2.7 April, Autism, and Intersectionality - Part Two
Meet Jesenia - Creator of Neurospicy Networking

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

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!


2.3 Year in Review 2023 - Neurodivergent Edition
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 tiffany@hackinghypermobility.com
Be sure to give us permission to use your name

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
Research article Folate-dependent hypermobility syndrome: A proposed mechanism and diagnosis
Sacroiliac joint fusion in patients with Ehlers Danlos Syndrome: A case series - ScienceDirect
EDS Maternity Co-created Tools | hEDS Together
2023 Diagnostic Framework for Pediatric Joint Hypermobility - The Ehlers Danlos Society

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!

1.11 The One With The Crossover
***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 - info@hackinghypermobility.com
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

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!
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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 info@hackinghypermobility.com. 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

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.

1.08 A Conversation with a Late Diagnosed Woman, Interview 2
The Bendy Mommas continue their conversation on late diagnosis.
Resources and References:- “Neurodivergent: What is It?” Cleveland Clinic Health Library https://my.clevelandclinic.org/health/symptoms/23154-neurodivergent
- 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/
- 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/
- 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/
- 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
- Norris Labs EDS Resources: https://www.thenorrislab.com/research/ehlers-danlos-syndrome/eds-resources
- 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/
- An interview with Judy Singer: http://www.myspectrumsuite.com/meet-judy-singer/
- 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
- 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
- The Curable App: https://www.curablehealth.com/

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:- “Neurodivergent: What is It?” Cleveland Clinic Health Library https://my.clevelandclinic.org/health/symptoms/23154-neurodivergent
- 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/
- 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/
- 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/
- 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
- Norris Labs EDS Resources: https://www.thenorrislab.com/research/ehlers-danlos-syndrome/eds-resources
- 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/
- An interview with Judy Singer: http://www.myspectrumsuite.com/meet-judy-singer/
- 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
- 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
- The Curable App: https://www.curablehealth.com/

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.

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.


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.

1.02 Overview of the Diagnostic Process
In this episode we discuss preparing to see a doctor for an evaluation of hypermobility and the Ehlers-Danlos Syndromes in general.
Hop over to our blog to see the full list of resources, books, articles, and tools mentioned in this episode and to find your homework!
https://www.hackinghypermobility.com/post/show-notes-episode-1-02

1.01 Introducing the Hacking Hypermobility Podcast
Have you ever been told you were hypermobile, double jointed, or super bendy? Were you singled out for the cool party tricks you could do with your fingers, shoulders, and elbows?
Show Notes Episode 1.01
National Academies of Sciences, Engineering, and Medicine. 2022. Selected Heritable Disorders of Connective Tissue and Disability. Washington, DC: The National Academies Press. https://doi.org/10.17226/2643
https://nap.nationalacademies.org/catalog/26431/selected-heritable-disorders-of-connective-tissue-and-disability?fbclid=IwAR0sCmd8sZ22kWSOnK3Nz0gYEvBf5C_3AE91BlIcM5za8WInEsDOt0kG8AY
Our Meet Cute "spicy accountant" story Jan 31, 2022