Hacking 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 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. --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

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.  --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

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. --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

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. --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

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. --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

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. --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

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.  --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

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. --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

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. --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

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. --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

Meet Jesenia - Creator of Neurospicy Networking --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

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 --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

The Bendy Mommas are still on Spring Break and will return in two weeks with new episodes! --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

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/ --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

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 --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

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 --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

Oh hi! The Bendy Mommas are back and we have lots of exciting things in store for 2024! --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

***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 --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

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 --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support

Join the Two Bendy Mommas as they answer some fun questions. Shelli's daughter joins in the fun to play MC.  --- Support this podcast: https://podcasters.spotify.com/pod/show/hackinghypermobility/support