Podcasts on Ehlers-Danlos Syndrome

With growing awareness about the Ehlers-Danlos syndromes, varying resources in different types of media developed over the last years. Our Chronic Pain Partners’ Team is collecting their favorite books, podcasts and films on EDS and its comorbid condition in a series of listicles you will find on our website over the next months. We have shared our favorite books in our special newsletter issue in May for EDS Awareness Month! Today, we’ll continue with a list of podcast on the Ehlers-Danlos Syndromes and rare disease podcasts. 

Ehlers-Danlos Podcasts

An illustration of a zebra with colorful stripes

AWOL Zebra 

“I have hEDS. If I don’t talk with someone I think I’ll go crazy! The answer? I share my daily life as a sort of medication. AWOL Zebra aims to educate, share and have fun. Learn how to fight this invisible illness with me, CHristie Lynn Hanchey. Restoring my body back to health. Sharing my ups downs and in-betweens. You’re not alone. Join me and let’s learn together. AWOL Zebra is not authorized, endorsed, or sponsored by anyone. It’s a no holds barred discussion about Fascia, hEDS and plenty of other stuff.”

Listen to AWOL Zebra: HERE


The image shows a computer screen displaying a podcast advertisement. The podcast is called "Bendy Bodies Podcast" and features "The Hypermobility MD, Dr. Linda Bluestein." The advertisement includes a logo with stylized letters "BB" in blue and purple, and a photo of Dr. Linda Bluestein, who has long, wavy, light brown hair and is smiling. The background of the advertisement is white with a blue border.

Bendy Bodies

“Are you affectionately known as ‘Gumby’ among your friends and family? Being ‘double-jointed’ isn’t just a quirky trait—it can lead to a host of problems throughout the body, even if you were once ‘bendy’ but aren’t anymore. Connective tissue disorders, like Ehlers-Danlos Syndromes (EDS), often go unrecognized by doctors, causing life-altering symptoms such as pain, frequent injuries, joints ‘giving way,’ fatigue, gastrointestinal issues, and insomnia.

Welcome to the Bendy Bodies podcast, hosted by EDS expert, Dr. Linda Bluestein, MD. Join us as we delve into topics relevant to anyone experiencing symptomatic joint hypermobility. From insightful discussions with specialists boasting diverse expertise to practical tips for optimizing your hypermobile health, we’re here to empower you on your journey to wellness.”

Listen to the Bendy Bodies Podcast: HERE


A photo of a smiling young man with blonde locks who has an illustration of a brain on his shoulder. Text: The Chiari Champion

Chiari Champion

“Are you someone, or have a loved one, with Chiari malformation, Syringomyelia, Ehlers-Danlos syndrome, or a related disorder? Searching for a community that will raise some questions, find some answers, and share some humor and personal experiences in a fun and engaging forum? Welcome to The Chiari Champion. I’m Noah Forman, and this podcast’s purpose is to raise awareness, seek solutions, and share our stories so that we can grow, heal, and bond – to live life to its fullest and find strength in our purpose. So join me on this journey, where I’ll be joined by special guests, medical experts, innovative thinkers, and prominent voices in the field. The Chiari Champion…let’s start conquering each week…together. Follow us now on Apple Podcasts, Spotify, or whenever you enjoy your podcasts.”

Listen to the Chiari Champion Podcast: HERE


The image shows a logo with the text "Fantastic Pains" in the center. Surrounding the text are lines radiating outward in a circular pattern. The lines are in different colors, including black, blue, and purple. Below the logo, there is a button labeled "Edit Image." The background is white.

Fantastic Pains and How We Hide Them

“Join on us on our individual journeys living, coping, and laughing at our lives with Ehlers-Danlos Syndrome or EDS. We intend to raise awareness about invisible Illnesses, commiserate with fellow chronic disease friends, and share our own coping strategies and advice we have accumulated on our respective journeys.”

Listen to the Fantastic Pains Podcast: HERE


The image shows a podcast advertisement. The podcast is titled "Finding Your Range: Hypermobility and Chronic Pain Uncovered" and is hosted by Jeannie Di Bon. There is a photo of Jeannie Di Bon, a woman with shoulder-length blonde hair, smiling. The podcast is available on YouTube, PodBean, and Spotify, as indicated by their logos.

Finding Your Range

“Welcome to Finding Your Range, the Podcast which uncovers the truth behind living with hypermobility, Ehlers-Danlos Syndrome and chronic pain. Your host is Jeannie Di Bon, a movement therapist who specialises in working with clients with these conditions. She is also the author of two books – Pilates Without Tears and Hypermobility Without Tears. She is an educator of teachers and therapists in the field of movement for hypermobile patients and speaks regularly for The EDS Society and the HMSA. Jeannie also has hypermobile EDS and was a chronic pain sufferer herself. Her passion is to help others move pain-free. This Podcast features expert guests and patient stories. We hope you enjoy this Podcast. Thank you for listening.”

Listen to Finding Your Range: HERE


Yellow Background with three big white H. Hypermobility Happy Hour

Hypermobility Happy Hour

“Meet host Kerry, an attorney passionate about spreading awareness about hypermobility conditions including hypermobile Ehlers-Danlos Syndrome. Guests on the Hypermobility Happy Hour have included world renowned physicians in the field of hypermobility conditions, advocacy experts, individuals living with hypermobility conditions, and a United States ambassador. Listen in as we examine a wide range of topics, including treatment options for hypermobility conditions and ways to improve the doctor-patient relationship.”

Listen to the Hypermobility Happy Hour: HERE


Green background with white text: Hacking Hypermobility

Hacking Hypermobility

“We explore the health and wellness concerns of people on the hypermobility spectrum from diagnosis to management, asking those on the forefront of research and treatment how to help all of us on the hypermobility and connective tissue disorder spectrum including the Ehlers-Danlos Syndromes.”

Listen to Hacking Hypermobility: HERE


An illustration of a brain with black letters: Occult Aware-ness

Occult Awareness

“”Occult Awareness” is a transformative podcast dedicated to shining a light on the often misunderstood realm of hidden or ‘occult’ medical conditions. The podcast serves as a beacon of hope and knowledge for individuals navigating the complexities of rare and difficult-to-diagnose conditions, such as Occult Tethered Cord and Cervical Cranial Instability (CCI) within the Ehlers-Danlos Syndrome (EDS) population. Each episode invites listeners into the lives of those who face the daily challenges of seeking accurate diagnoses, battling misperceptions, and often receiving inadequate treatment.The heart of “Occult Awareness” lies in its compelling storytelling, as guests share their personal journeys, from the trials of living with undiagnosed symptoms to the triumphs of finding understanding and proper care. Alongside these powerful narratives, the podcast brings expert voices from the medical community to discuss the subtleties of occult conditions, current research, and emerging treatments.By fostering a community of empathy and advocacy, “Occult Awareness” empowers those affected by these conditions and educates the broader public, healthcare providers, and policymakers about the critical need for awareness and the nuances of medical care for occult disabilities. Each episode aims to educate, inspire, and advocate for change, contributing to a more informed and compassionate society.”

Listen to Occult Awareness Podcast: HERE


Rare Disease Podcasts

An illustration of a diverse group of people with text: Nordpod, the voice of rare disease

NordPod

“Join us for inspiring stories and news about what is being done to help people with rare diseases live their fullest and best lives. Find out what is happening on the frontlines of care, advocacy, research, and science.”

Listen to NordPod: HERE


Blue text on white background: One Upon a Gene Podcast, True stories of raising rare kiddos

Once Upon A Gene

“Once Upon a Gene is a podcast that explores the world of raising children with disabilities and rare genetic disorders. Host, Effie Parks shares her own personal story of raising a child with CTNNB1 syndrome, while trying to find the non-existent rule book of bringing up such a special kid. This podcast features interviews with fellow parents, therapists, doctors and anyone else who wants to share their story.”

Listen to Once Upon A Gene: HERE


An image with dots that are interconnected. Text: Rarecast

RareCast

“RARECast is a Global Genes podcast hosted by award-winning journalist Daniel Levine. It focuses on the intersection of rare disease with business, science, and policy.”

Listen to Rare Cast: HERE


an image with the text "rare together" written in a cursive font inside a speech bubble. Below the speech bubble, it says "a podcast from LDA Research." The background of the image is blue with two simplified human figures, one on each side of the speech bubble.

Rare Together Podcast

“Welcome to Rare Together, the podcast series produced by LDA Research. Join us as we bring together individuals living with rare diseases to share their personal stories and experiences in a series of one-to-one conversations. Available on YouTube, Spotify, Apple Podcasts, and through the Rare Disease Network Facebook group, Rare Together offers individuals, including those living with rare diseases, caregivers, family members, and healthcare professionals, the opportunity to hear from others affected and gain deeper insights into the unique complexities associated with different rare diseases. Bringing them together by what makes them unique – being rare together.”

Listen to the Rare Together Podcast: HERE


A colorful illustration of DNA with text: Wait how do you spell that?

Wait, How Do You Spell That?

“WAIT, HOW DO YOU SPELL THAT? is a rare disease podcast produced by Patient Worthy.

We talk about issues affecting people rare and underdiagnosed conditions and interview advocates from across the community. We’re definitely not doctors, and we can’t give you medical advice. We’re just here to chat and laugh and learn about issues that impact people living with diseases our doctors can’t to spell.”

Listen to Wait, How Do You Spell That?: HERE

This is meant as a community-centered list. We have not listened to all podcasts but are sharing all resources we think may be helpful for our community in an alphabetical manner. Let us know in the comments whether you found one of our recommendations helpful or not and if you have further resources we should add. 

Karina Sturm

July 2024

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