Archive for the ‘Community’ Category

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The 7-Step Recipe for EDS Caregivers: Tips for Helping Patients

Posted on January 4, 2024

One of the earliest lessons in flight training is the aviation order of operations: Aviate, Navigate, Communicate. In pilot training, those words mean the following. Aviate: Use the skills to maintain control of the aircraft. Navigate: Know where you are, and where you intend to go. Communicate: Let someone know your plans and needs. Maybe […]

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A New EDS Clinic Coming to a Town Near You (Via Telehealth)

Posted on January 1, 2024

Chronic Pain Partners is excited to speak with David Jameson Harris, a former McKinsey consultant, about his latest project, a new Ehlers-Danlos syndrome clinic, hopefully offering access to expert EDS care in several states starting in February 2024. CPP’s Karina Sturm spoke with David Jameson Harris about his new EDS clinic, his goals, and how […]

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HEDS Researchers Explain Clinician-Associated Trauma

Posted on August 31, 2023

This is the second article in our series covering psychological medical trauma. The first article provided an introduction to what concepts of psychological medical trauma exist and the newly-created concept of clinician-associated trauma. It also introduced a study regarding hEDS patients and clinician-associated trauma. This article will look deeper into the details of this study […]

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EDS & Psychological Medical Trauma: An Introduction

Posted on August 20, 2023

[Content warning: trauma, PTSD, mental healthcare, negative clinician behavior, difficult medical encounters] Have you ever read something that left you speechless? I have so many thoughts and feelings about this article – ones that I can’t express with any sort of coherence at the time. What I can say: clinicians READ THIS (finger pointing down […]

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EDS, Dating & Internalized Ableism

Posted on August 19, 2023

I sat in my car on the edge of the San Francisco Bay during a huge storm staring at my phone, finger hovering over the button on a dating app to post a profile that, if pushed, had the potential to change my life. I had recently moved back to the Bay Area and was […]

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Filmmaker Suri Ellerton, Her EDS Journey & New Film Highlighting The Challenges Of Disabled Parents

Posted on June 30, 2023

Suri Ellerton is a filmmaker, has three children, and lives with Ehlers-Danlos Syndrome and various comorbid conditions. In this interview with Chronic Pain Partners’ Karina Sturm, Ellerton shares her EDS journey, what it means to be a disabled parent, and how her own experiences relate to her latest film project, “The Game.”  Sturm: Hi, Suri! […]

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New Netflix Documentary ‘Take Care of Maya’ Highlighting Wrongful Child Abuse Allegations

Posted on June 24, 2023

[CW: Suicide] Netflix has just released the highly anticipated documentary, “Take Care of Maya,” which unveils the heart-wrenching journey of the Kowalski family as they confront and challenge wrongful child abuse allegations. Directed by Henry Roosevelt, also known for his role in “The Social Network,” the documentary delves deep into the lives of the Kowalskis, […]

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When Formal Education with Ehlers-Danlos Syndrome Isn’t Possible: 3 Tips

Posted on June 23, 2023

As discussed in the previous articles in this series, attending school with Ehlers-Danlos Syndrome (EDS) can be extremely difficult but possible with creative adaptations. Sometimes, however, accommodations aren’t enough, and formal education is impossible.  The United States has compulsory school attendance laws, which vary significantly by state, but all take the truancy of school-aged children […]

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