Posts Tagged ‘EDS updates’

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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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Em Made it to the Conference!

Posted on August 21, 2012

We wrote about Em before the EDNF Learning Conference in Cincinnati, Ohio. She is a very brave young lady. Her mother tells us how she is doing. “But, my kid is pretty amazing. Growing up is challenging under the best of circumstances – adding to that mix complicates things exponentially. Em has had a rough […]

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EM didn’t miss the EDNF Learning Conference!

Posted on August 1, 2012

The EDNF Learning Conference in Cincinnati, Ohio will be a rewarding experience for all who can attend. Even if traveling is a challenge, it is definitely worth it.  This EDS family anticipates going to the conference, and shares their perspective in a personal blog. “Been awhile since I posted, so I thought I would do a […]

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Athlete with Ehlers-Danlos Syndrome

Posted on July 4, 2012

This is an interview with a Paralympic Swimmer who has EDS.  EDSer Nancy Burpee is interviewed by Faye Rapoport. Many EDSers struggle to maintain an exercise program. Frequent acute injuries prevent us from exercising routinely.  Swimming is one of the best sports for EDS because the water’s bouyancy reduces the weight on our unstable joints. We can […]

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