Archive for the ‘Vascular/Cardiac’ Category

Triathletes Face Ironman Test to Help Boy with Ehlers-Danlos Syndrome

Posted on July 31, 2015

By Neil Metcalfe. Hugo Whatton is a 3-year-old with Vascular type Ehlers-Danlos Syndrome.  His caregivers must be very cautious in handling him and preventing injuries which could be life-threatening.  Kim and Alasdair Hutt of Laurel Avenue, Potters Bar, will tackle a 2.4 mile swim, a 112 mile bike ride and to finish off, they will […]

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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    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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Double-jointed? Often in Pain? It Could be Ehlers-Danlos Syndrome!

Posted on June 6, 2015

Ehlers-Danlos Syndrome (EDS) was once thought to be a rare disorder, but EDS experts say its prevalence is under-estimated and its diagnosis is often missed! Learn the signs.   By Abi Jackson _ If you suffer from these ailments, you could have EDS – a rare condition of the joints. Here’s what you need to know. If you don’t know […]

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New Program for Vascular Ehlers-Danlos Syndrome

Posted on May 10, 2015

Vascular Ehlers-Danlos Syndrome is the most devastating type of EDS. It’s a disease so rare that only one out of every 250,000 people will be diagnosed with it. The DEFY Foundation was started by two students at West Chester University.

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“POTs and EDS” Webinar by Dr. Henry Burkholder – Recording Available

Posted on January 6, 2015

  EDS Awareness invites you to watch this FREE webinar recording!    Sponsored by:     Dr. Henry Burkholder  presents “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”. He is a Pediatric Cardiologist and presenter at the 2014 EDNF Conference in Houston, TX.         PRESENTER:  Dr. Henry Burkholder, Pediatric Cardiologist   TOPIC:   Postural Orthostatic […]

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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   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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Firefighters in UK Raise Money for Ehlers Danlos Syndrome

Posted on November 28, 2014

Five-year-old Annabelle Griffin inspired local firefighters to perform physical feats — raising money and Ehlers Danlos Syndrome awareness in the UK. Annabelle has VEDS. FIREFIGHTERS pushed themselves to the limit scaling the UK’s three highest peaks and cycling 500 miles to raise a staggering £15,000 for charity. The group of eight men from Oldham Fire Station […]

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How long until you received a proper diagnosis for EDS?

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