Archive for the ‘Marfans’ Category

Boston Walk to Support Marfans/EDS Research

Posted on June 18, 2017

By  John Lynds, Times Staff: Just before she turned 3-years-old, Beth Villani’s daughter, Hannah was diagnosed with Ehlers-Danlos Syndrome. “Our daughter was diagnosed in January at just age 2 years and 10 months,” said Villani. “I will be honest and say that hearing that news broke my heart.  When the doctor told me we would […]

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New Federal Rules Make it Hard to Get an Opioid Refill for Pain Sufferers

Posted on June 18, 2016

By Felice J. Freyer GLOBE STAFF   . Jonathan Rodis takes his hydrocodone pills sparingly, only when the pain becomes unbearable. He doesn’t like the way the drug fogs his brain. And lately, he also needs to conserve — because new federal rules make it hard to get a refill. . . . Rodis has […]

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Join the New England/MA Ehlers-Danlos Initiatives Facebook Group

Posted on February 22, 2016

The EDS New England/Massachusetts Support Group, members of the EDS Awareness support group network, have created a new Facebook Group and released a new survey.  Results from both the New England survey and the EDS Awareness survey survey will be included in upcoming reports. Thank you for your participation in these important projects, EDS Awareness […]

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Lack of Clinical Understanding about Hypermobility Conditions and Treatment

Posted on July 28, 2015

By Bill Schu. Many doctors do not understand the clinical significance of joint hypermobility.  This has a major impact on accessing appropriate treatments. Mobility is great. Hypermobility? Less great. In the joints, hypermobility leads to musculoskeletal pain – and often times, lots of it. A recent review in the Journal of Pain Research outlined several […]

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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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Free Webinar: “Introduction to Ehlers-Danlos Syndrome” by Dr. Brad Tinkle – Recording Available

Posted on May 19, 2015

Watch this FREE video presentation! Dr. Brad Tinkle presents “Introduction to Ehlers-Danlos Syndrome”.   Sponsored by     _  Click here for the recording of this presentation _  Click here for the slides used in this presentation _ To browse MORE VIDEO presentations by other EDS Experts – Click Here  (then select “previous page” to view more recordings.) _ About our […]

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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 653 Votes)
  • 1 year (5%, 264 Votes)

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