Archive for the ‘Caregivers’ Category
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 […]
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 […]
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 […]
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 […]
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
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 […]
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 […]
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 […]