PODCAST · health
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.
Episodes
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46: GLC 2026 After Thoughts
Luna and Shelli review the good, bad, and the hilarious from their time at the EDS Society's 2026 Global Learning Conference. Did you know we have merch? Visit out store!
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45: Binocular Vision Dysfunction
All about Shell's recent BVD diagnosis and prism glasses 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...
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44: It's All Connected
We're baaaaaaack. 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,...
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43: A Conversation With Dr. Akilah Cadet
Dr. Akilah Cadet is the founder and CEO of Change Cadet, an organizational development consulting firm. As a Forbes Next 1000 entrepreneur, her work is behind some of the biggest brands that you use every day. Dismantling white supremacy through storytelling is at the core of her work as a…
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42: July is Disability Pride Month
Summary 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,...
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41: A Conversation With Fascia Researcher Dr. Tina Wang
Summary 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....
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40: A Conversation With Movement Therapist Jeannie Di Bon
Keywords 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...
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39: Help I'm Alive: I is for Intersectionality
Shelli explores the personal experiences of multiple surgeries, focusing on the scheduling, preparation, recovery, and interactions with healthcare professionals.Shelli also shares insights into the challenges faced during the surgical process, including anesthesia, pain management, and the...
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38: Help, I'm alive: H is for Hand Surgery
In this episode, Tiffany warns about having surgery on both hands on the same day.
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37: Help, I'm Alive: G is for Good Vibrations
Does anyone actually read these descriptions? If you're reading this, not on podcast staff, and have the spoons, leave us a review or comment and tell us about this silly episode description!
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36: Help, I'm Alive: F is for Fuuuuuuuu
Oopsie! Shelli's YouTube
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35: Help I'm Alive: Dysfunction Junction
Keywords brain, dysautonomia, executive functioning, personal journey, daily challenges
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34: 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…
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33: Help, I'm Alive: C is for Complicated
C is for Complicated 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…
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32: 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...
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31: 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...
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30: 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...
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29: 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
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28: 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...
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27: 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…
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26: Why Get Diagnosed?
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...
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25: Hypermobile Dudes Part 3: The Conclusion
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...
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24: Patient Advocacy & Insurance
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.…
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23: Hypermobile Dudes Part 2: An Interview Panel With Three Men With hEDS
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...
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22: 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...
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21: 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...
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20: The Conversation With a Patient Advocate Continues
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…
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19: 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.
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18: April, Autism, and Intersectionality - Part Two
Meet Jesenia - Creator of Neurospicy Networking
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17: April, Autism, and Intersectionality
Filmed on location at the Omni Nashville on November 10, 2023 Contact LyricalShkspr at [email protected] and purchase her books here: Linktr.ee/lyricalshkspr
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16: All the Love for Charm City
The Bendy Mommas are still on Spring Break and will return in two weeks with new episodes!
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15: Disability Rights and TikTok
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/
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14: 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...
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13: 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. References Clinician-associated traumatization from difficult medical encounters: Results from a...
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12: The One Where We Come Back
Oh hi! The Bendy Mommas are back and we have lots of exciting things in store for 2024!
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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 - [email protected] Many thanks to Dr. Rebecca Land at Kennedy Krieger's Center for Autism and Related Disorders. For direct access to the...
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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…
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9: 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.
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8: A Conversation with a Late Diagnosed Woman, Interview 2
The Bendy Mommas continue their conversation on late diagnosis. See notes from Episode 7!
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7: A Conversation with a Late Diagnosed Woman, Interview 1
Luna and Shelli sit down to talk about their own experiences with neurodivergence. Resources and References: “Neurodivergent: What is It?” 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,...
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6: 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.
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5: 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.
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4: Hypermobility Assessment: All About Beighton
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
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3: 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…
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2: 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!...
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1: 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...
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ABOUT THIS SHOW
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.
HOSTED BY
Two Bendy Mommas
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Frequently Asked Questions
How many episodes does Hacking Hypermobility have?
Hacking Hypermobility currently has 46 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is Hacking Hypermobility about?
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...
How often does Hacking Hypermobility release new episodes?
Hacking Hypermobility has 46 episodes. Check the episode list to see recent publication dates and frequency.
Where can I listen to Hacking Hypermobility?
You can listen to Hacking Hypermobility on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts Hacking Hypermobility?
Hacking Hypermobility is created and hosted by Two Bendy Mommas.
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