Posts Tagged ‘EDS updates’

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Folate-Dependent Hypermobility: Researchers at Tulane’s EDS Clinic Look Into New Possible Mechanism For Hypermobile EDS

Posted on April 25, 2023

A recent publication by scientists at Tulane University’s EDS clinic proposes a possible new mechanism behind hypermobility: folate dependency. The researchers hypothesize that MTHFR mutations may lead or contribute to a form of hypermobile EDS and present a treatment with 5-methyltetrahydrofolate to improve the patient’s symptoms.  Tulane’s EDS Clinic Two years ago, Tulane University’s EDS […]

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EDSed Episode 4: Dr. Jacqueline Wolf on GI symptoms & Endometriosis

Posted on April 22, 2023

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 can […]

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Researchers Found New Possible Causative Gene For HEDS: MIA3

Posted on March 29, 2023

Exciting news from Poland! Researchers from the Department of Clinical Genetics at Nicolaus Copernicus University in Torún, Poland, released a preprint of research that may hold the answers to the cause of hypermobile Ehlers-Danlos Syndrome (hEDS) for a part of the patient population. Specifically, Junkiert-Czarnecka et al. investigated the MIA3 gene in people with hEDS […]

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EDSed Episode 2: Dr. Lilian Holm on Physical Therapy & EDS

Posted on January 27, 2023

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 can […]

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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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How You Can Identify If You Have Vascular EDS?

Posted on December 8, 2021

Vascular Ehlers-Danlos condition (Vascular EDS, VEDS, also known as EDS type IV) is an exceptional, predominantly inherited, genetic connective tissue issue. It is especially genuine due to the risk for unconstrained blood vessels or organ rupture. Vascular EDS is assessed to happen between 1 out of 50,000 people to 1 of every 200,000 and results […]

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Ehlers-Danlos Syndrome (Vascular Eds): Things you should know!

Posted on November 29, 2021

Vascular Ehlers-Danlos condition is an inherited connective tissue problem that is brought about by deficiencies in a protein called collagen. It is viewed as the most extreme type of Ehlers-Danlos disorder (EDS). Common symptoms incorporate thin, transparent skin; bruising; specified facial appearance; and fragile arteries, muscles, and inside organs. Vascular EDS is generally caused by […]

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