Hacking Hypermobility
By Two Bendy Mommas
Visit us at:
www.hackinghypermobility.com/
Watch video episodes with closed captioning here:
www.youtube.com/channel/UC77bi8SlAh-ZsX4z6b3cpTw
Hacking HypermobilityMay 17, 2023
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.
1.04 Hypermobility Assessment: All About Beighton
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
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
Our Meet Cute "spicy accountant" story Jan 31, 2022