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 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 c...
Jul 05, 2025•1 hr 16 min•Season 3Ep. 11
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 importance of patient advocacy in navigating medical care. Tiffany shares some exciting news for mid-atlantic zebras Luna is the jokester in this episode! Keywords surgery, recovery, anesthesia, patient exper...
Jun 21, 2025•34 min•Season 3Ep. 10
In this episode, Tiffany warns about having surgery on both hands on the same day.
Jun 07, 2025•28 min•Season 3Ep. 9
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!
May 24, 2025•41 min•Season 3Ep. 8
Oopsie! Shelli's YouTube
Apr 26, 2025•38 min•Season 3Ep. 7
Keywords brain, dysautonomia, executive functioning, personal journey, daily challenges
Apr 12, 2025•11 min•Season 3Ep. 6
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, supp...
Mar 29, 2025•40 min•Season 3Ep. 5
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 Keywords Ehlers-Danlos Syndrome, Hypermobility, Chronic Pain, Surgery, Recovery, Personal Health, Medical Journey, Patient Experience, Health Awareness, Dysautonomia References : Complicated...
Mar 15, 2025•50 min•Season 3Ep. 4
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...
Mar 01, 2025•20 min•Season 3Ep. 3
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 Referen...
Feb 15, 2025•30 min•Season 3Ep. 2
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…
Feb 01, 2025•47 min•Season 3Ep. 1
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
Jan 01, 2025•13 min
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 apprec...
Aug 01, 2024•38 min•Season 2Ep. 17
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 a...
Jul 18, 2024•45 min•Season 2Ep. 16
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 Overv...
Jul 11, 2024•1 hr 18 min•Season 2Ep. 15
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 ....
Jun 27, 2024•46 min•Season 2Ep. 14
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 .
Jun 13, 2024•27 min•Season 2Ep. 13
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 ....
May 30, 2024•44 min•Season 2Ep. 12
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.
May 23, 2024•38 min•Season 2Ep. 11
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 ....
May 23, 2024•54 min•Season 2Ep. 10
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 ....
May 16, 2024•35 min•Season 2Ep. 9
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.
May 09, 2024•27 min•Season 2Ep. 8
Meet Jesenia - Creator of Neurospicy Networking
Apr 25, 2024•56 min•Season 2Ep. 7
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
Apr 11, 2024•53 min•Season 2Ep. 6
The Bendy Mommas are still on Spring Break and will return in two weeks with new episodes!
Mar 28, 2024•3 min•Season 2Ep. 5
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/
Mar 14, 2024•11 min•Season 2Ep. 4
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
Feb 29, 2024•38 min•Season 2Ep. 3
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. ...
Feb 15, 2024•31 min•Season 2Ep. 2
Oh hi! The Bendy Mommas are back and we have lots of exciting things in store for 2024!
Feb 01, 2024•1 hr 25 min•Season 2Ep. 1
***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-sta...
May 17, 2023•51 min•Season 1Ep. 11
