Hacking Hypermobility

Oopsie!

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, support

References

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:

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

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.

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. 

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.

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.

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!

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.

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. 

In this mini episode, The Bendy Mommas discuss why TikTok is important for building communities.

In the US, find your elected representatives:

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.

***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

The Bendy Mommas continue their conversation on late diagnosis.

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.

Diagnosis of Hypermobility / Ehlers-Danlos Syndromes:

Criterion 1: The Beighton Score

Resources mentioned in this episode are listed and linked here:

In this episode we discuss preparing to see a doctor for an evaluation of hypermobility and the Ehlers-Danlos Syndromes in general.

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