Archive for the ‘Vascular/Cardiac’ Category

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Annabelle Inspires New National Charity in the UK

Posted on May 28, 2014

This 5 year old young lady is campaigning with her parents Sarah and Jared Griffin for EDS Awareness and Research funding. The UK has a new charity with a brave little girl from Bury at its heart. Five-year-old Annabelle ‘AJ’ Griffin suffers from Vascular Ehlers-Danlos Syndrome (VEDS), the most serious form of Ehlers-Danlos Syndrome (EDS). The […]

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Annabelle is a Spirited Young Girl With Vascular EDS

Posted on May 10, 2014

Annabelle’s story has raised much publicity for VEDS! This brave young girl is now attending and enjoying school in spite of her struggles with VEDS.  By Tui Benjamin. “SHE has become something of a Bury celebrity — the spirited young girl Annabelle with the wide smile for whom a bump in the playground could be fatal. […]

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“Doctor Speaker Series”: Cardiac manifestations in EDS – RECORDING AVAILABLE

Posted on May 8, 2014

  On May 7th, Dr. Staci Kallish spoke about cardiac manifestations in EDS. EDS Awareness’ Doctor Speaker Series is a webinar program hosted by EDSawareness.com and sponsored by www.bodysupportstore.com  Upcoming FREE sessions will be offered the 1st and 3rd Wednesdays of each month.  Hope you can join us!  CLICK HERE for the recording More about Dr. Staci Kallish Click […]

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Next-Generation Sequencing (NGS), Faster and More Economical for EDS & Marfans

Posted on April 21, 2014

      Better,  faster and more economical methods are emerging to analyze the genetic factors affecting our health. “Genetic factors play some part in nearly all health conditions and characteristics. However, there are some conditions in which these factors are almost fully responsible for causing the condition. These are called genetic disorders, or inherited […]

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Matt Smith and Family Are Looking to Raise Awareness of Ehlers-Danlos

Posted on March 2, 2014

EDS is not as “rare” as some people think ….. but it is “rarely diagnosed properly“! A very rare life-threatening disease that affects about one in every 250,000 people has struck three members of the same Skegness area family. All three were diagnosed at the end of last summer with Ehlers Danlos Syndrome – and […]

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Teenage Singer is Raising Funds for Ehlers-Danlos

Posted on December 15, 2013

Emilia has been such a blessing for this family. By Tui Benjamin, Reporter A TEENAGE singer-songwriter is hoping to hit the fundraising high notes by joining forces with a youngster battling a rare medical condition. Emilia Ward, aged 17, has the ‘X Factor’ according to Brandlesholme four-year-old Annabelle ‘AJ’ Griffin, who is now the aspiring […]

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Alberto Friedmann from the Discovery TV Episode on Ehlers-Danlos

Posted on November 4, 2013

Watch Discovery Health Channel’s TV episode about Ehlers-Danlos Syndrome. Be sure to also listen to the replay of  interview with Alberto Friedmann, who starred in that TV episode.  Instructions on how to replay are found by clicking this link. Watch the video: This TV segment portrays of EDSers and describes the challenges they face.  It addresses EDS Hypermobility […]

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Innovative Blood Test for Vascular Ehlers-Danlos Syndrome

Posted on September 19, 2013

Researchers are making some progress discovering a potential biomarker for aortic dissections related to Vascular Ehlers-Danlos Syndrome.  Posted by: Anna Ishibashi “Researchers from ShrinersHospital for Children, OregonHealth & ScienceUniversity, Baylor College of Medicine and the Texas Heart Institute, have demonstrated for the first time that fibrillin-1 in the blood stream could be a biomarker to diagnose aortic aneurysms and aortic dissections. […]

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