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Hello, and welcome to my Blog about all things chronic illness and disability. My name is Karina, I am a German native but have been residing in San Francisco for six years now, and I live with a variety of chronic conditions, including Ehlers-Danlos syndrome, mast cell activation syndrome, dysautonomia, craniocervical instability, factor VII deficiency, […]
Resources Newsletter
EDSed is our new series of full-length interviews with international EDS experts. These educational interview series with journalistic (news) quality is complementary to our webinar recordings and another free resource we provide for our community. All films are produced by journalist, and We Are Visible filmmaker Karina Sturm and sponsored by Chronic Pain Partners. You […]
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 content and what distinguishes Cox’s book from other available Ehlers-Danlos Syndrome resources. [We previously interviewed […]
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 […]
