Hacking Hypermobility

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

If you are able, Shelli recommends watching this episodeSummaryIn 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.Keywordshypermobility, anxiety, medical gaslighting, Ehlers-Danlos syndrome, dysplasia, neurological research, chronic pain, personal experiences, recovery, supportReferencesKamboureli, 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 infoLinks 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 ComplicatedIn 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 incisionsKeywordsEhlers-Danlos Syndrome, Hypermobility, Chronic Pain, Surgery, Recovery, Personal Health, Medical Journey, Patient Experience, Health Awareness, DysautonomiaReferences: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.KeywordsRare Disease Day, orthopedic surgery, bottom-up processing, top-down processing, medical appointments, family support, therapy, election processReferenceshttps://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-zAlexander 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 0010-9452https://www.simplypsychology.org/bottom-up-processing.htmlhttps://www.additudemag.com/adhd-brain-prefrontal-cortex-attention-emotions/?srsltid=AfmBOooUMT3xWbHqqlzRZVm76WHKLyQ-bB70pGOdnd_zXB4dWoSr2SYv

SummaryIn 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.KeywordsEhlers Danlos, surgery recovery, neurodivergence, interoception, emotional well-being, chronic illness, physical therapy, pain management, accessibility, alexithymiaReferenceHogeveen, 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. 

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, 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.  Show notes for this episode are available here.

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 Ehlers-Danlos Syndrome affects them. Luna also shares some very exciting and highly anticipated news from the Norris Lab at MUSC regarding a newly released hEDS research report. Find the full show notes for this episode here.

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, especially "complex" ones like those of us with EDS, neurodivergence, and other co-morbidities. Full show notes are available here.

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 discuss their experiences with hypermobility. Here's part two of the men's interview panel! Full show notes available here.

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. 

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.

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 "complex" ones like those of us with EDS, neurodivergence, and other co-morbidities.  Full show notes are available here.

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.

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

In this mini episode, The Bendy Mommas discuss why TikTok is important for building communities. In the US, find your elected representatives: https://www.usa.gov/elected-officials Keep up with the US Government here: https://www.c-span.org/

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

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

***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

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

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/

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/

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.

Show Notes Episode 1.05 Diagnosis of Hypermobility / Ehlers-Danlos Syndromes: Criterion 2-3 Resources mentioned in this episode are listed and linked here.

Show Notes Episode 1.04 Diagnosis of Hypermobility / Ehlers-Danlos Syndromes: Criterion 1: The Beighton Score Resources mentioned in this episode are listed and linked here: https://www.hackinghypermobility.com/post/show-notes-episode-1-04

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.

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

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 https://www.tiktok.com/t/ZTRrYaf5k/?k=1