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26

EDSed Episode 1: The Norris Lab

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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 […]

27

Book Review: Holding It All Together When You’re Hypermobile

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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 […]

30

Meghan O’Rourke and The Invisible Kingdom

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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, […]

31

Interview with Dr. Pradeep Chopra regarding the psychological and psychiatric aspects of the Ehlers-Danlos syndromes and hypermobility spectrum disorders

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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. […]

34

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

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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, […]

35

#AbleismusTötet: Violence against people with disabilities

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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 […]

36

EDS & Aging

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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 […]