Articles

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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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New Study: Pain Threshold and Sensation in cEDS

Posted on January 12, 2024

A new study from Ghent, Belgium, discusses the difference between pain sensation and pain thresholds between subjects with genetically-confirmed classical Ehlers-Danlos syndrome (cEDS) and those without any form of Ehlers-Danlos Syndrome (EDS). The article, published in  The Journal of Pain, discussing this research is “Sensory Profiling in Classical Ehlers-Danlos Syndrome: A Case-Control Study Revealing Pain […]

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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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