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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 variety of 5 – 10 minute videos of other people across the country […]
“He helped my daughter get from being bedridden to going back to college,” says Michele Pestana when I meet her at Healy Physical Therapy and Sports Medicine in Providence, Rhode Island, on a hot summer day in July 2022. Pestana is 47 years old and has EDS, like most of Dr. Michael (Mike) Healy‘s patients. […]
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,” highlighting the challenges of living with several chronic conditions, including Ehlers-Danlos syndrome. Meghan O’Rourke is an award-winning writer, poet, and editor, […]
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 treating complex pain patients with a focus on people with Ehlers-Danlos syndrome for decades and is a passionate advocate for EDSers across the globe. […]
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 with Norris about their current research and how it will change care for people with hEDS. [The final findings […]
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 pleasure to talk to author Jules Machias about their life with Ehlers-Danlos syndrome, their career as a writer, and […]
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 with Chronic Pain Partners her decade-long experience working with families accused of child abuse due to a medically complex child, […]
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. In April 2021, four disabled individuals were murdered in a facility in Potsdam, Brandenburg, which spiked an uproar by the disability community, calling for […]
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. This project will be published as part of the EDS Awareness Newsletter in a collaboration between CEO […]
“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 I recently reviewed as well. However, I wouldn’t be much of a journalist […]
Speech at my film screening @ Chapman University Interviews Podcast with Linda Bluestein and EDS Awareness https://www.chronicpainpartners.com/webinar/we-are-visible-podcast/ Volunteer Work Newsletter for Chronic Pain Partners
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 are a lot of great gift guides online, and I, personally, […]
