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An image of a woman rubbing her neck with her hands. She has long brown hair and closed eyes. Red text on green background: Book Review. Chronic pain is a bitch! Don't let it turn you into one.
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Book Review: Holding It All Together When You’re Hypermobile

For our Chronic Pain Partners Post edition of November 2022, I reviewed author and fellow zebra Christie Cox's new EDS book called Holding It All Together When You're Hypermobile. In this article, we will provide more information on the book's…
Sarah, a woman with long blonde hair sits on her bed with a big box of medication in front of her.
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We Are Visible Too! Episode 1: Sarah Rightmire

We Are Visible (Too) is an ongoing mini-film series portraying people with EDS all across the globe. In this mini-documentary series, I will continue on the We Are Visible  - a feature-length film about people with EDS - journey and add a…
A woman with long brown hair hanging over her left shoulder sits on a chair with her right arm under her chin. She wears a brown sweater and sits in a bright white room.

Meghan O’Rourke and The Invisible Kingdom

As part of our monthly Chronic Pain Partners Post Newsletter, I had the pleasure of speaking with Megan O’Rourke, a fellow Zebra, but more importantly, journalist and author who recently published the bestselling book “The Invisible Kingdom,”…
A photo of Dr. Chopra, a man with short brown hair and glasses. Next to him is an image of Karina, a woman with short brown hair and leaf-shaped dangling earrings. Next to her is the EDS Awareness Logo with text: Interview, Dr. Chopra & Karina Sturm, Psychological aspects of EDS - Dr. Chopra’s Statement explained.
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Interview with Dr. Pradeep Chopra regarding the psychological and psychiatric aspects of the Ehlers-Danlos syndromes and hypermobility spectrum disorders

Introduction EDS expert and pain specialist Dr. Pradeep Chopra contacted Chronic Pain Partners to speak about a recently published review on the psychological and psychiatric aspects of Ehlers-Danlos syndrome. Dr. Chopra has been…
A person with rainbow colored hair that are shaved on the sides. The person wears a black tank top and holds a fluffy white dog.

Jules Machias about their EDS journey and new middle-grade book Fight + Flight

For our Chronic Pain Partner Post newsletter, the Chronic Pain Partner media team is excited to introduce the EDS community to the new middle-grade* fiction book “Fight + Flight,” which features a character with EDS! I had the…
A woman with long brown hair bound to a ponytail sits in her garden on a chair with giraffe pattern. She smiles, wears a black shirt and sunglasses on top of her head.

Interview with EDS advocate Donna Sullivan, TCAPP, about wrongful child abuse allegations and medically complex children

For our Chronic Pain Partners Post newsletter, I spoke with Donna Sullivan, board member of The Coalition Against Pediatric Pain (TCAPP). Sullivan lives with EDS and has several affected children as well. In this interview, she shares…
A comic-like illustration of a Zebra with a golden microphone in front and text: EDS & Aging, New Project
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EDS & Aging

The EDS & Aging Project Funny Bone Newsletter - March 2022 presented by EDS Awareness This is a community-centered project with people older than 45 who want to share their experiences about aging as a person with EDS.…
Black and white image of Karina, a woman with shaved head. She is wearing glitter eye shadow and red lipstick.
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Raising awareness for EDS: I was a guest in several podcasts and blogs!

Ehlers-Dan… What? Most people - and sometimes even medical professionals - do not know how to spell Ehlers-Danlos syndrome at all, let alone that they would know anything about the various symptoms that are associated with the rare illness.…
A woman with long blonde hair is measuring oxygen levels of a young boy with blonde hair
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We Are Visible – The first feature-length Ehlers-Danlos syndrome documentary

Ah, what’s there to say about my first feature-length film, We Are Visible? It’s probably the most important project I ever took on, and I poured all my heart and energy into it.  Let’s start from the beginning.  We…