Articles

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Hypermobility Happy Hour Podcast with Dr. Linda Bluestein

Posted on July 27, 2019

A doctor and a lawyer walk into a podcast….   Meet Dr. Linda Bluestein and attorney Kerry Gabrielson, two professional women who managed to successfully complete many years of education despite having a painful genetic condition affecting their connective tissue that would need lifelong management.   Listen along to their podcast as they tackle the […]

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September 7 Kansas City Ehlers-Danlos Syndromes and Associated Conditions Seminar

Posted on June 8, 2019

Topics To Be Covered: Genetics, Cardiology, Gastroenterology, Dysautonomia, Mast Cell Activation Syndrome, Physical Therapy,  Occult Tethered Cord, Chronic Pain Management and Connecting the Dotsbetween Medical Complexities Provided By: EDSKC Collaboration Inc. in partnership withclinicians from Children’s Mercy Kansas City andthe University of Kansas Medical Center CLICK here for Program Brochure CLICK here for Physician Seminar […]

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2019 EDS Leadership Conference

Posted on May 18, 2019

We are delighted to have completed our first successful EDS Leadership event on May 17, 2019 in Mason, Ohio The conference was free, and we had over 300 life and “live stream” registered attendees from: US, AU, BE, Columbia, CA, UK, MX, Neatherlands, … Videos of the conference presentations will be posted on Leadeds.com soon. […]

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2018 Excellence in Advocacy Award From AARP Ohio

Posted on March 30, 2019

John Ferman, Co-founder of the EDS Awareness a.k.a. Chronic Pain Partners 501(c)(3) non-profit program received the 2018 Andrus Excellence in Advocacy award at the AARP Ohio Volunteer Summit DInner in Columbus Ohio on October 29, 2018. John has been a full time volunteer since he retired in 2013 and has: Helped to create over 115 local […]

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New Ehlers-Danlos Syndromes Physician CME Education Program

Posted on March 29, 2019

Introduced at the EDS Conference in Las Vegas About this program. We have had over 1200 participants since we introduced the program!  The Ehlers-Danlos Syndromes Physician CME Education Program is the first online Ehlers-Danlos Syndromes course accredited to provide continuing education credits. This free program will cover the fundamental principles for the diagnosis, classification, and […]

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Living With EDS: Judgment from Others

Posted on March 25, 2019

“When you judge another, you do not define them, you define yourself” – Wayne Dyer Living with Ehlers Danlos Syndrome (EDS) is like being a doll that is stitched together but whose stitches are slowly coming apart at the seams.  You know it, you feel the pain but are powerless to stop it. You have […]

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Teenage Girl Who Is Allergic to Almost Everything: ‘I Want My Old Life Back’

Posted on December 27, 2018

CAITLIN KEATING December 26, 2018 08:30 AM Fifteen-year-old McKenze Messman was living every teenager’s dream during the summer of 2015. The soon-to-be freshman at Waverly High School in Waverly, Nebraska, was spending her days at the pool, waterskiing on nearby Johnson Lake, and going to cheerleading practice three times a week after landing a spot on […]

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Told Symptoms ‘All in Her Head’ Raising Awareness About Rare Disorders

Posted on October 27, 2018

BY KATHARIN CZINK AND DINA BAIR Maddie Schubert and Dr. Brad Tinkle It’s often written off as anxiety, particularly in girls. But when the symptoms are thoughtfully pieced together, a puzzling and widely unrecognized disorder is revealed. A quick check of her blood pressure is just one step in Maddie Schubert’s extensive daily routine. “This is on after […]

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