Articles

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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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Outcomes of Craniocervical Instability Fusion Surgery in People with EDS

Posted on March 10, 2024

A recent study by Henderson et al. found significant benefits for EDS patients with severe craniocervical instability who underwent occipito-cervical fusion surgery.  Craniocervical instability is one of the most severe neurological complications of the Ehlers-Danlos syndromes, causing many affected individuals symptoms such as headaches, severe full body pain, dizziness, nausea, blurred vision, paresthesia, fatigue, weakness, […]

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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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Know Your Love Language? Learn to Speak it Well Despite Chronic Illness

Posted on February 5, 2024

Did you know each of us shows affection and love in different ways? No matter who you might be cuddled up to this Valentine’s Day, it’s important to understand that a successful intimate relationship is a constantly evolving process of tuning in, adapting, and forging deeper connections, compassion, and caring for one another. Becoming aware […]

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Medical Gaslighting as a Source of Clinician-Associated Trauma

Posted on January 29, 2024

Content warning: This article discusses medical gaslighting and real-life examples of clinician-associated trauma. Please take care of yourself as you see fit.  As previously reported, clinician-associated trauma (CAT) is a new term used to describe the trauma created by repeated, negative clinical interactions. It was coined as a result of the study reported in “Clinician-associated […]

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Tethered Cord in EDS: A Patient Guide to Symptoms, Diagnostics, Treatments, and Risks

Posted on January 22, 2024

Understanding Tethered Cord Syndrome and Occult Tethered Cord in Ehlers-Danlos Syndrome (Also see the simplified version of this article) Unravelling the tethered cord has proven to be an elusive topic. Basically, there is not a great deal of credible insight or medical research available on it. To start simply, we begin with basic anatomy and […]

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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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Unraveling Tethered Cord for EDS Patients (simplified version)

Posted on January 13, 2024

Special thanks to EDS medical provider Pradeep Chopra, MD for reviewing this article curated by our media team. Learn more from his expertise in his video webinar on EDS Pain Management (discussion on tethered cord at the 1:13 mark).   Intro: Hope for Tethered Cord Syndrome Patients Tethered Cord Syndrome (TCS) is a common condition found […]

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