
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,”…

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…

Interview with Dr. Norris on finding the genetic cause(s) for hypermobile EDS and much more
For Chronic Pain Partners, I had the honor to speak with Dr. Russell “Chip” Norris from the Norris Lab at MUSC, a research laboratory dedicated to finding the genetic cause(s) for the hypermobile Ehlers-Danlos syndrome. Sturm speaks…

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…

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…

#AbleismusTötet: a research project to uncover violence against people with disabilities
CW: Violence
What is #AbleismusTötet?
#AbleismusTötet is a project initiated by the German disability rights organization AbilityWatch e. V. to uncover all cases of violence against people with disabilities in German care homes.…

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.…

Jeannie Di Bon’s Zebra Club App – A Review
“Wow,” was the first word that came to my mind when I started to exercise with Jeannie Di Bon’s new program: The Zebra Club. My feelings regarding Jeannie’s new app were very similar to when I read Diana Jovin’s book Disjointed, which…

Gift ideas for chronically ill people
The holidays are around the corner, and soon, we all will be ordering presents for our healthy or chronically ill friends and family. I don’t know how you feel about this, but I always have a hard time finding the right gift. Luckily, there…