Triumph Over Hypermobility: A Trust-Building Podcast For EDS Patients

It all started with getting bored.

Table of Contents

Read Time: 3 min 25 sec

Speaking Time: 6 min 36 sec

I am always seeking to learn more, absorb information, and reach my ultimate form: the human encyclopedia. I’m kidding, maybe.

As a neurodivergent person, my particular “special interest” is knowledge gathering. I am a lifelong student, always googling, reading, and listening to new information.

While in one of my hyperfixated research sessions, I came across a YouTube channel called “The Bendy Bodies Podcast.” A podcast for EDS(Ehlers Danlos Syndrome). This particular episode discussed Physical Therapy(PT) and Ehlers-Danlos Syndrome(EDS), which got my proverbial antenna up. The bait was set, and I took it—hook, line, and sinker.

[Information] EDS or Ehlers-Danlos syndrome is an inherited connective tissue dysfunction syndrome that was previously considered rare, but that assertion is now being called into question. There are 13 known subtypes. The Hypermobile type, the most common, has been suggested to be as prevalent as 1 in 5,000 to 1 in 20,000 people, according to some estimates. These numbers, however, can vary significantly, as hEDS and other types of EDS are often underdiagnosed or misdiagnosed due to a lack of awareness and understanding within the medical community and the overlap of symptoms with different conditions.
Check the hyperlink for more information about EDS or see my other post HERE

Check out The Host and Guest On their Socials by Djinni Whispers

I am so grateful that I did. This podcast (something I do not generally listen to) was a revelation. The host and founder, Dr. Linda Bluestein, is a board-certified anesthesiologist with several endorsements and, as evident by my googling, a voracious advocate for EDS’ers. I honestly would be afraid to look at her schedule. Mad Pops to her; I don’t know how she manages all of that, especially with a chronic illness like EDS.

Her guest speaker, Dr. Lillian Holm, DPT or “Doctor of Physical Therapy”, yes, PTs are full-on doctors. Dr. Holm is another advocate for the EDS community, and her professionalism and education on bodies like ours is evident in the the quality of material that flows from her like a font of information.

The Heart of Healing: Embracing the Journey Together

The podcast episode “#92” featuring Dr. Linda Bluestein and Dr. Lillian Holm serves not just as an educational resource but as a communal call to arms for all of us battling EDS. It underscores a fundamental truth that our journey toward wellness is both

Screen Capture image of The Bendy Bodies Podcast hosted by Dr. Linda Bluestein webpage featuring podcast #92 with guest speaker Dr. Lilian Holms

personal and shared. By tuning in, we’re not merely seeking answers for ourselves; we’re joining a broader narrative of resilience, hope, and collective empowerment.

Empowerment Through Education: Learning to Navigate Our Path

A significant part of our battle against EDS involves dispelling myths and confronting misinformation — a task that Dr. Bluestein and Dr. Holm handle with finesse and authority. Their discussion serves as a powerful reminder of the importance of being informed, not just about the latest research or therapeutic techniques, but about understanding our own bodies. Their insights empower us to advocate for ourselves in medical settings, demand the care we deserve, and recognize that, while our path may be fraught with challenges, it is also laden with potential victories.

The Importance of Community and Support

Perhaps one of the most resonant themes of this podcast episode is the emphasis on community and support. As EDS warriors, the value of connecting with others who genuinely understand our struggles cannot be overstated. Dr. Bluestein and Dr. Holm exemplify this spirit of community, not just in their professional collaboration but in the way they reach out to listeners, inviting us into a space of shared experiences and mutual support.

The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths
-Elizabeth Kübler-Ross

This episode, and indeed the broader work of these remarkable professionals, reinforces the idea that we are stronger together.

By sharing our stories, successes, and setbacks, we build a tapestry of experiences that enriches our collective understanding of EDS and how to live with it, not just as individuals but as a unified and indomitable community.

A Call to Action: Engaging with Our EDS Community

Inspired by the podcast, I urge you to take actionable steps toward engaging with the EDS community and embracing the wealth of knowledge and support available. Follow Dr. Bluestein and Dr. Holm on social media, engage with their content, and let their insights fuel your journey. Beyond this, seek out local and online EDS support groups, forums, and resources. The power of shared experiences in fostering understanding, empathy, and progress cannot be underestimated.

Final Thoughts: Our Journey Forward

As we close this chapter of our blog, let’s carry forward the message of hope, empowerment, and community that Dr. Bluestein and Dr. Holm have so passionately shared. Their podcast is more than just a source of information; it’s a beacon of light for all of us navigating the complexities of EDS. Let their words inspire you to

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embrace your journey with renewed vigor, optimism, and a deep-seated belief that, together, we can overcome the challenges of EDS and forge a path of wellness and fulfillment.

Remember, our journey with EDS is not defined by the hurdles we face but by the courage, strength, and community we build along the way. So, let’s listen, learn, and lean on each other. Together, there’s no limit to what we can achieve. Let’s not just survive EDS; let’s thrive in spite of it.

Together, we’re not just surviving; we’re thriving.

Additional Videos by The Bendy Bodies Podcast to check out:

Celebrities and Influencers that are Publicly Members of the EDS Community:

DjinniWhispers

What I listened to while working on this article. I encourage everyone to check out this band. They are a touch of magic.

DjinniWhispers

Mosaics Within My Mind