Caregivers

The picture shows a young woman with straight, shoulder-length pink hair and glasses, sitting on a bed. She is wearing a light blue hoodie and black pants. To her right, there is a dog lying on the bed. The room has a red wall behind the bed, and there is a framed picture of a cat above the bed. On the left side of the bed, there is a small round mirror on the wall and a bedside table with a lamp. The bedspread is pink and white with a floral pattern.

Filmmaker Andrew Abrahams on the New EDS Documentary ‘Complicated’

Chronic Pain Partners’ Karina Sturm was honored to speak with Andrew Abrahams, who has been directing the new Ehlers-Danlos documentary Complicated. Abrahams is an award-winning, two-time Academy Award-shortlisted producer/director of creative non-fiction films and the president of Open Eye Pictures. He is also a cinematographer and photographer. His documentary Under Our Skin, which highlights the […]

Tips for Ehlers-Danlos Caregivers

The 7-Step Recipe for EDS Caregivers: Tips for Helping Patients

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 […]

A doctor doing an ultrasound on the arm of a patient

A New EDS Clinic Coming to a Town Near You (Via Telehealth)

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 […]

Illustration of two heads that flow into one another, a red and a blue one.

Part One: EDS & Psychological Medical Trauma: An Introduction

[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 […]

Caring for a person with Ehlers-Danlos syndrome: An interview with two caregivers

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

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

    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  

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

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 […]

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

  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 […]