Archive for the ‘Vascular/Cardiac’ Category

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5-year-old NC Boy Avoids Bumps Due to Vascular Ehlers Danlos Syndrome

Posted on November 14, 2014

 This is a very touching story about 5-year-old Matthew’s struggle to understand his Type IV Ehlers Danlos Syndrome. “It’s really sad to say my wife knows more about it than the doctors,” says his father, Joshua, who was diagnosed last year. At 33 years old, he finally discovered the reason for his multiple vascular ruptures. His son is […]

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Dr. Peter Rowe – “Is The Physical Examination Normal in Chronic Fatigue Syndrome?”

Posted on October 24, 2014

Dr. Peter Rowe discusses 3 areas of dysfunction often found in Chronic Fatigue Syndrome patients —circulatory disturbances, joint hypermobility, and movement restrictions. These appear to have some commonality with Ehlers-Danlos Syndrome.  Fortunately, recent research is beginning to change the previous misperception that there are “no abnormal physical findings with CFS” and refute that it has a “psychosomatic origin”.   “In […]

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Cleveland Clinic webinar on “POTs, Syncope and Other Autonomic Disorders” held November 12, 2014

Posted on October 10, 2014

Cleveland Clinic webinar Date: Wednesday, November 12, 2014 Time: 12:00 PM (EST) (See link at the bottom of this article to register) Autonomic disorders are neurological diseases which can affect the cardiovascular system. Syncope, Dysautonomia and POTs (Postural Tachycardia Syndrome) are the most common forms. Over one million Americans are impacted with a primary autonomic […]

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Ehlers Danlos Syndrome Support Group is starting in Rochdale, UK

Posted on October 7, 2014

 Rachel Hastie is forming an EDS Support Group for her daughters and to help raise EDS Awareness. Her youngest daughter, Ellicia Grace, is showing signs of Vascular EDS. By Amy Westlake. “A support group to help those with Ehlers Danlos Syndrome (EDS) has been set up in Rochdale by former Smithy Bridge resident, Rachel Hastie […]

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Annabelle’s Family Runs for Vascular Ehlers-Danlos Syndrome Awareness

Posted on August 14, 2014

 Many friends and volunteers made it a special day for Annabelle as she participated in the Manchester UK Color Run.  The Griffin family spearheads ongoing campaigns to fundraise and spread awareness for Vascular Ehlers-Danlos Syndrome in the UK.  COLOURFUL fundraisers painted the town not just red, but every shade possible, when they took part in “the world’s happiest […]

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Exercise and Lifestyle Therapies are Key to Managing POTS

Posted on July 11, 2014

POTS experts, Dr. Blair Grubb and Dr. Geoffrey Heyer, explain the symptoms and treatments.  Studies have indicated that 1 in 4 of those diagnosed with POTS are disabled. Exercise helps by enhancing the effectiveness of the peripheral skeletal muscle pump, according to Dr. Grubb. By Deborah Kotz.  As a consumer health reporter, I assume I’ve heard of every health […]

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180 Guests Enjoy Ball with Annabelle Griffin & Ehlers Danlos Support UK

Posted on June 30, 2014

Annabelle’s charity continues to garner support and raise awareness of Ehlers-Danlos Syndrome (EDS). By Saiqa Chaudhari.   “A GLITTERING ball saw 180 guests raise more than £3,000 for a charity which aims to “make the invisible visible”. Brandlesholme charity Annabelle’s Challenge hosted the glamorous event at The Village Hotel in Bury in aid of national organisation EDS UK. The […]

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Australian “Jelly-Jointed Sisters” Fight Ehlers Danlos Syndrome Together

Posted on June 26, 2014

We are very excited about the addition of our first Australian Group to our Ehlers Danlos Syndrome Support Group Family! By DANIEL BATEMAN.   Elyshia and Emily Hickey may appear to be typical, healthy teenage girls. On the inside, however, they are battling a rare genetic disease that has given them the joints of elderly women. The Cairns […]

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