Archive for the ‘Research’ Category

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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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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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Free Webinar: “Connective Tissue Disorder Research” by Dr. Hal Dietz – Recording Available

Posted on June 16, 2015

Watch this FREE educational video!   _ Dr. Hal Dietz presents “Connective Tissue Disorder Research”   Sponsored by www.bodysupportstore.com    TOPIC:  “Connective Tissue Disorder Research”   PRESENTER: Dr. Hal Dietz _ _   Click here for the recording of this presentation Click here for the slides used in this presentation  __ About our speaker: Dr. Hal Dietz – Dr. Dietz  is […]

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Dr. Mark Lavallee webinar “Exercise is Medicine” – Video Recording

Posted on March 3, 2015

Watch this FREE online learning session! Mark E. Lavallee, M.D presents “Exercise is Medicine – especially for Ehlers-Danlos”. He has EDS, classical type and has lectured at many EDNF conferences.

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Dr. Peter Byers Webinar on Vascular Ehlers-Danlos Syndrome – Video Recording

Posted on December 17, 2014

EDS Awareness invites you to watch this FREE webinar recording! Sponsored by www.bodysupportstore.com   TOPIC:    “Vascular Ehlers-Danlos Syndrome / EDS type IV”  PRESENTER:   Dr. Peter Byers About our speaker:  Dr. Byers is Director of the Collagen Diagnostic Laboratory (CDL) at the University of Washington in Seattle, WA. He is also a Professor of Medicine and Pathology and Adjunct Professor of […]

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Study Indicates Postural Orthostatic Tachycardia Syndrome (POTS) Predominantly Affects Young Women

Posted on July 6, 2014

This UK study indicates that POTS patients are predominantly young, well-educated women. Approximately 1/5 were diagnosed with CFS and a similar proportion had Ehlers-Danlos Syndrome, suggesting that there may be an underlying overlapping cause, say the researchers. “A debilitating syndrome that causes an excessively rapid heartbeat on standing up, predominantly affects young well educated women, and blights their lives, […]

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British University Designs Physical Therapy Program for Hypermobility Syndrome

Posted on April 6, 2014

UWE Bristol is developing a promising PT program to help patients with Hypermobility Syndrome (JHS). “Physiotherapy researchers at UWE Bristol have come up with a package of treatment and information to help people affected by Joint Hypermobility Syndrome (JHS).” “Physiotherapy researchers at UWE Bristol have come up with a package of treatment and information to help people […]

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Hard Budget Choices for Research of Rare-Disease Cures

Posted on March 21, 2014

Difficult decisions need to be made on how to spend research money for “rare diseases”, such as Ehlers-Danlos Syndrome. This NIA study – which began in 2003 –  focuses on 5 disorders, including Ehlers-Danlos and Marfan syndromes. By AMY DOCKSER MARCUS BETHESDA, Md.—Last month, at the National Institutes of Health clinical center here, Sarah Kucharski and Fran […]

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