Archive for the ‘EDS Research’ Category

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New Cervical Spine Instability Publication: The Authors Explain Their Findings

Posted on March 27, 2023

For Chronic Pain Partners Newsletter, writer Christie Cox speaks with two pioneers in the Ehlers-Danlos community Leslie Russek and Susan Chalela, about their recent publication on upper cervical instability (UCI). Leslie Russek is a DPT, PhD, and Professor Emeritus of Physical Therapy at Clarkson University and an Orthopedic Certified Specialist Physical Therapist with over 30 […]

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Surgery Prep: Meeting Your EDS Hospital Stay Needs

Posted on February 22, 2023

How to be prepared & stay safe when having a hospital stay with Ehlers-Danlos syndrome (EDS) This article will give an overview of ways you can prepare for a hospital stay when you have EDS, as well as tips on surgical prep and your own patient advocacy. People with Ehlers-Danlos syndrome (EDS) often need surgery […]

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Small Fiber Neuropathy is a Common Feature in Hypermobile EDS, Research Finds

Posted on January 25, 2023

New research by a German group of scientists published in the European Journal of Neurology seeks to understand  if there is an underlying common cause among hypermobile EDS (hEDS), small fiber neuropathy (SFN), and postural orthostatic tachycardia syndrome (POTS). Their research sheds light on a possible common mechanism behind those three conditions.  SFN, POTS & […]

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EDSed Episode 1: The Norris Lab

Posted on November 21, 2022

EDSed is our new series of full-length interviews with international EDS experts.  These educational interview series with journalistic (news) quality is complementary to our webinar recordings and another free resource we provide for our community. All films are produced by journalist, and We Are Visible filmmaker Karina Sturm and sponsored by Chronic Pain Partners. You […]

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Interview with Dr. Norris on finding the genetic cause(s) for hypermobile EDS and much more

Posted on June 25, 2022

  For Chronic Pain Partners, journalist Karina Sturm had the honor to speak with Dr. Russell “Chip” Norris from the Norris Lab at MUSC, a research laboratory dedicated to finding the genetic cause(s) for the hypermobile Ehlers-Danlos syndrome. Sturm speaks with Norris about their current research and how it will change care for people with […]

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Dr. Tinkle Edits EDS Special Supplement for American Journal of Medical Genetics

Posted on March 18, 2017

Dr. Tinkle Edits Ehlers-Danlos Sydrome Special Supplement for American Journal of Medical Genetics.   Dr. Tinkle also served as an author / co-author for one-third of the papers in the supplement: The Ehlers-Danlos Syndromes: Reports from the International Consortium on the Ehlers-Danlos Syndromes PRZen / CHICAGO — Left Paw Press congratulates Dr. Brad T Tinkle […]

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High Tryptase Associated with Dysautonomia and POTS

Posted on October 18, 2016

Scientists at the National Institutes of Health have identified a genetic explanation for a syndrome characterized by multiple frustrating and difficult-to-treat symptoms, including dizziness and lightheadedness, skin flushing and itching, gastrointestinal complaints, chronic pain, and bone and joint problems. Some people who experience these diverse symptoms have elevated levels of tryptase — a protein in […]

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