Archive for the ‘Pacing Techniques’ Category

Living with Ehlers-Danlos Syndrome – Safety Tips

Posted on December 5, 2016

By Ellen Lenox Smith
Living with Ehlers-Danlos syndrome (EDS) is a lifelong process that requires constant monitoring on how to remain active, yet also physically secure and safe. In this article, Ellen shares some safety tips that she hopes will help others with EDS.

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Ehlers-Danlos – “An Accident Waiting To Happen”

Posted on June 18, 2015

Philip Howard was the 88th person in Britain to be diagnosed with Ehlers-Danlos syndrome (EDS). He has written a book about his fight to overcome adversity. Philip Howard’s new book “An Accident Waiting To Happen” tells of living with a rare condition that leaves him prone to falling over and breaking bones. Ben Blosse reports. […]

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Support For Friends of Hypermobiles/ EDSers

Posted on June 9, 2015

    A new, closed, Facebook group is available for support of friends who are caring for, supporting or living with people who have hypermobility/ EDS. _ _   If you meet these requirements you can join at NOTE: no EDSers will be admitted to the group, it is for support people only so that […]

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People With Invisible Disabilities, including Ehlers-Danlos, Need More Understanding

Posted on April 12, 2015

NPR radio ran a segment on invisible disabilities to commemorate the 25th anniversary of the Americans with Disabilities Act (ADA).  While progress has been made, much still needs to be done.  Click here for the original broadcast on NPR radio. Join the efforts to spread awareness of ADA on its July 26th anniversary. Resources include this Tool Kit, a project of the ADA […]

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“The Feldenkrais Method” Webinar by Cynthia Allen – Video Available

Posted on March 17, 2015

Watch this FREE online learning session!    Cynthia Allen, GCFP, STMI gave a presentation titled “The Feldenkrais Method and other Somatic Approaches to Improve Function and Ease”. It focuses on movement techniques to increase your body awareness and learning how to improve your quality of movement.   Sponsored by       Click here for a link to […]

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Roslyn’s Quest for a Service Dog to Assist with Ehlers-Danlos Syndrome

Posted on February 7, 2015

In response to one mother’s request for help, proposed legislation requiring insurance companies to provide coverage for the costs for service dogs will be considered by lawmakers in Hartford, CT.  Roslyn is navigating the process of obtaining a service dog for assistance with her EDS needs. The community is rallying behind her! By Kathleen Schassler, The […]

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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
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