Did you know we have merch? Visit out store!

Resources:

Neurolens

Many thanks to:

Carolyn Stanley - Shelli's youngest kiddo and bendy art student

Joe O'Connor - Newton Tech

Navindi Weerasinghe - Chief Optician at Peepers Crofton/Gambrills

Drs. Patel of Peepers Crofton/Gambrills

00:00 Introduction to the episode and personal health story

01:11 Explanation of binocular vision dysfunction and symptoms

02:38 Personal struggles with eye strain and vision focus

04:05 The process of getting prescribed neural lens glasses

07:12 Confirmation of vision issues through testing

10:40 Understanding the diagnosis and its implications

12:16 Connection to other health conditions and experiences

16:50 Explanation of eye strain and focus challenges

24:20 The impact of new glasses on vision and daily life

35:05 Experiencing the benefits of neural lens glasses

37:40 Fashion and functionality with new eyewear

38:27 Closing remarks and resources for viewers

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

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

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

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.

Buckle up, buttercups, this season opener is almost two hours long!

References:

EDS Society 2026 Global Learning Conference Information: https://www.ehlers-danlos.com/2026-global-learning-conference/

Petrucci-Nelson T, Guilhaumou S, Berrandou TE, Gensemer C, Georges A, Huff M, Fustier MA, Esmael A, Henry J, Jaye O, Phookan R, Dooley S, Byerly K, Loizzi B, Fenner R, Mach E, Weintraub A, Daylor V, Weninger J, Koren N, Bistran E, Griggs C, Griggs M, Severance S, Byrd R, Patel S, Kautz SA, Maitland A, Bouatia-Naji N, Norris RA. Complex Genetics and Regulatory Drivers of Hypermobile Ehlers-Danlos Syndrome: Insights from Genome-Wide Association Study Meta-analysis. medRxiv [Preprint]. 2025 Sep 21:2025.09.19.25336146. doi: 10.1101/2025.09.19.25336146. PMID: 41001447; PMCID: PMC12458961.

Griggs M, Daylor V, Petrucci T, Weintraub A, Huff M, Willey S, Byerly K, Loizzi B, Morningstar J, Ball LE, Bethard JR, Drake R, Sharma A, Eichinger JK, Nichols M, Kautz S, Shapiro S, Maitland A, Patel S, Norris RA, Gensemer C. Proteomic discoveries in hypermobile Ehlers-Danlos syndrome reveal insights into disease pathophysiology. Immunohorizons. 2025 Sep 17;9(10):vlaf044. doi: 10.1093/immhor/vlaf044. PMID: 40972649; PMCID: PMC12448790.

Gensemer C, Petrucci T, Beck T, Daylor V, Griggs M, Griggs C, Weintraub A, Byerly K, Guo L, Morningstar J, Kornblau I, Biggs R, Moore K, Koren N, Hastings C, Oberlies E, Zientara ER, Devey E, Dooley S, Stayer K, Fenner R, Singleton K, Luzbetak S, Bear D, Byrd R, Weninger J, Bistran E, Beeson G, Kerns J, Osterhaus M, Fleck E, Schnaudigel J, Butler S, Severance S, Kendall W, Delaney JR, Judge DP, Chen P, Yao H, Guz J, Awgulewitsch A, Kautz SA, Mukherjee R, Price R, Henderson F Sr, Shapiro S, Francomano CA, Kovacic JC, Lavallee M, Kontorovich AR, Berrandou TE, Slaugenhaupt SA, Milan D, Maitland A, Patel S, Bouatia-Naji N, Norris RA. KLK15 alters connective tissues in hypermobile Ehlers-Danlos syndrome. iScience. 2025 Aug 12;28(9):113343. doi: 10.1016/j.isci.2025.113343. PMID: 40949095; PMCID: PMC12424230.

Due to size limitations, the preceding is a truncated list of studies referenced in this episode. Check out https://hackinghypermobility.com for a complete list.

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

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

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.

EDS Society info on aEDS

aEDS VUS info

Links to specific assistive devices along with phots will be posted soon - it's Shelli's birthday weekend and the weather is looking good!

Full show notes are available here.

In this episode, Luna and Shelli interview Dr. Tina Wang, a leading expert in fascia and hypermobility disorders. They discuss the importance of fascia in the body, its role in conditions like Ehlers-Danlos Syndrome, and the challenges faced in diagnosing and treating these disorders. Dr. Wang shares insights from her research, the significance of holistic care, and the need for better education and advocacy in the medical community. The conversation also touches on innovative treatment options and the upcoming Fascia Research Congress, highlighting the importance of collaboration in advancing the understanding of fascia and its impact on health.

~~~~

"Fascia is a system that permeates every organ."

"Fascia is crucial to all our metabolic processes."

"We are spiritual beings in a physical body."

Keywords

fascia, hypermobility, Ehlers-Danlos Syndrome, pain management, holistic health, proprioception, fascia research, chronic pain, treatment options, patient advocacy

Takeaways

Fascia is a crucial system that permeates every organ in the body.

Hypermobility is common in dancers and musicians, leading to unique challenges.

The treatment outcomes for myofascial pain are often unsatisfactory.

Patients need to learn how to manage their healthcare providers effectively.

Fascia plays a significant role in metabolic processes and overall health.

There is a need for clear diagnostic standards for hypermobility disorders.

Every patient requires an individualized treatment approach.

Many individuals with hypermobility are also highly sensitive and intuitive.

The Fascia Research Society is actively seeking collaborators for research.

Holistic care is essential for managing complex conditions like EDS.

It's our Third Birthday! Yay! Celebrate by taking a quick look back at some unseen footage from July 2022.

Later in the episode, Luna and Shelli continue their conversation with Dr. Tina Wang.

Keywords

hypermobility, Ehlers-Danlos syndrome, community support, advocacy, personal stories, awareness, medical care, mental health, holistic approaches, podcasting

Takeaways

Community support is crucial for individuals with hypermobility.

Personal stories can help others feel less alone in their struggles.

Advocacy and awareness are essential for improving care for hypermobility disorders.

The importance of holistic approaches in managing health conditions.

Sharing experiences can lead to greater understanding and empathy.

Elevating marginalized voices is a priority in the hypermobility community.

The podcast aims to bring diverse perspectives to the forefront.

Emotional health is intertwined with physical health in managing hypermobility.

Future goals include expanding outreach and resources for the community.

The journey of understanding and managing hypermobility is ongoing and requires collaboration.

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.

See notes from Episode 7!

Shelli's YouTube

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

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.

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. 

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

Find the full show notes for this episode here.

Diagnosis of Hypermobility / Ehlers-Danlos Syndromes:

Criterion 2-3

Resources mentioned in this episode are listed and linked here.

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 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

hypermobility, EDS, Integral Movement Method, Zebra Club, chronic pain, movement therapy, nervous system regulation, healthcare education, community support, patient advocacy

Summary

In this episode of the Hacking Hypermobility, Luna and Shelli chat with Jeannie Di Bon, a movement therapist and founder of The Zebra Club. They discuss the challenges faced by individuals with Ehlers-Danlos Syndrome (EDS) and hypermobility, including personal experiences with diagnosis, the importance of community support, and the Integral Movement Method (IMM) developed by Jeannie.

The conversation emphasizes the need for better education among healthcare providers, the significance of nervous system regulation, and the role of the Zebra Club app in providing resources and support for the hypermobile community.

Full show notes available here.

Takeaways

• Jeannie Di Bon developed the IMM to help those with EDS and chronic pain.
• The Zebra Club app offers community, movement classes, and educational resources.
• Nervous system regulation is crucial before engaging in physical activity.
• Personal experiences with diagnosis can shape professional practices.
• The importance of individualized approaches in movement therapy for hypermobile patients.
• Community support is vital for those living with chronic conditions.
• Education for healthcare providers about EDS is lacking and needs improvement.
• Gentle, gradual movement is more effective than high-intensity workouts for hypermobile individuals.
• The IMM is evidence-based and focuses on integrating movement with mindfulness.
• Awareness and advocacy for EDS and hypermobility are essential for improving patient care.

Resources & Links

Full Show Notes Available Here!

Jeannie's Website: https://jeanniedibon.com

The Zebra Club App: https://www.thezebra.club

Get Jeannie's Book, Hypermobility Without Tears

Bookshop.org

Amazon (US)

Amazon (UK)

Full show notes are available here.

In 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 incisions

Keywords

Ehlers-Danlos Syndrome, Hypermobility, Chronic Pain, Surgery, Recovery, Personal Health, Medical Journey, Patient Experience, Health Awareness, Dysautonomia

References:

Complicated

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

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…

Dr. Cadet is the co-owner of the Oakland Roots and Soul soccer team and author of the book White Supremacy is All Around Notes from a Black Disabled Woman in a White World.

Visit Dr. Cadet at https://changecadet.com or check out Dr. Cadet's podcast Humane Rights.

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.

Full show notes available here.

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

Tiffany shares some exciting news for mid-atlantic zebras

Luna is the jokester in this episode!

Keywords

surgery, recovery, anesthesia, patient experience, healthcare, hand surgery, hip surgery, medical interactions, patient advocacy, health management

Takeaways

• Surgery scheduling can be influenced by personal circumstances.
• Experiences with different types of surgeries can vary significantly.
• Preparation for surgery includes managing anxiety and ensuring hydration.
• Post-surgery recovery involves pain management and mobility exercises.
• Follow-up care is crucial for monitoring healing and addressing complications.
• Interactions with healthcare professionals can impact the overall experience.
• Patient advocacy is essential in ensuring proper care and communication.
• The importance of personal comfort items during surgery, like grippy socks.
• Understanding the role of anesthesia in the surgical process is vital.
• Ongoing challenges can arise even after successful surgeries.

Links

UVA EDS Clinic Press Release - https://news.med.virginia.edu/clinical/uva-health-launching-comprehensive-national-program-for-connective-tissue-disorders/

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. 

Be sure to give us permission to use your name

New episodes resume on International Zebra Day, January 31

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/