Archive for the ‘Caregivers’ 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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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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Caring for a person with Ehlers-Danlos syndrome: An interview with two caregivers

Posted on April 19, 2022

                John Ferman                                                       Gilbert Torres Ehlers-Danlos syndrome is a condition that affects every person differently. Even within the same type, symptoms can […]

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Ian’s story: 4 Year Old Living with Ehlers-Danlos Syndrome

Posted on January 29, 2017

    Our free EDS Awareness program provides each group with a listing on the Support Group Directory and Map, free webpages, coaching, and more… EDSawareness.com offers FREE Educational Sessions twice/month! To receive webinar announcements via email, Click Here To watch video RECORDINGS of previous presentations, Click Here  

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Free Webinar — “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients – Recording Available

Posted on June 7, 2016

Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com    TOPIC: “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients PRESENTER: Diane O’Leary, PhD   Dr. O’Leary is currently an Associate Adjunct Professor in philosophy at University of Maryland University College Click IMAGE for the recording of this presentation. Click here for the […]

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My Wife Had EDS and Did Not Know IT! – 8th Year Anniversary

Posted on April 21, 2016

  This website and its free programs are dedicated to the memory of Carol and thousands like her – who suffer from undiagnosed Ehlers-Danlos…  We were married for 41 years.  You’d think that after all of that time you would know everything there was to know about a person. –          I knew Carol was a […]

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More Summer Camps for Children with Ehlers-Danlos Syndrome

Posted on February 24, 2016

The Hole in the Wall Gang will be hosting a Rare Disease Summer Family Camp June 2-5 at Hole in the Wall.  Children with Ehler’s Danlos and their families will be eligible for this session.  In addition we also will host a General Family Weekend in the spring and in the fall (4/22-24 and 10/21-23) that […]

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