Archive for the ‘Community’ Category

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Books on Ehlers-Danlos Syndrome

Posted on March 14, 2024

With growing awareness about the Ehlers-Danlos syndromes, varying resources in different types of media developed over the last years. Our Chronic Pain Partners’ Team is collecting their favorite books, podcasts and films on EDS and its comorbid condition in a series of listicles you will find on our website over the next months. We are […]

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Decoding Medical Deductions: A Chronic Illness Patient’s Guide to Navigating Healthcare-Related Expenses and Taxes

Posted on March 5, 2024

“Decoding Medical Deductions” is an invaluable resource for individuals managing chronic illnesses and navigating the complex landscape of medical expenses and taxes in the United States. This comprehensive guide provides ten top strategies and resources to effectively manage medical expenses, optimize costs, and prepare for tax filing. The ebook covers various topics, including deduction eligibility, […]

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Children’s Book about Ehlers-Danlos Published

Posted on January 19, 2024

It’s here! Bendy Bones and Stretchy Skin: An Ehlers-Danlos Book by Pey Carter and their daughter Abigail Bailey hits the virtual shelves on January 23, 2024. Chronic Pain Partners has previously covered the details of the book–where the idea came from, how it took shape, the advocacy Pey does that is portrayed in the book, […]

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EDS Advocates to Follow on Social Media

Posted on January 10, 2024

The Ehlers-Danlos Syndromes may be considered a group of (mostly) rare connective tissue disorders; however, our community is more diverse and stronger than ever, with many advocates sharing their experiences and knowledge via social media. Chronic Pain Partners put together a list of EDS advocates meant to be a work in progress and, of course, […]

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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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