Archive for the ‘Support Group Activities’ Category

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“For the last 10 years I was told it was all in my Head” – It was EDS!

Posted on April 20, 2014

Many of those with Ehlers-Danlos are having a difficult time getting diagnosed. RARE DISEASE SUFFERERS say it is like banging their heads “against a brick wall” trying to get specialist treatment in Ireland – and that some doctors have thought they were making their symptoms up. Ehlers Danlos Syndrome TheJournal.ie spoke to three women who […]

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EDNF Presentation by Shane Robinson, Executive Director

Posted on August 5, 2013

By Diana Cleaveland, Watch this 4-part video series of a presentation given by Shane Robinson, Executive Director of EDNF, to the New England EDS Support Group on June 30, 2013. The topics include: the past and future goals of EDNF and the EDNF Conference held August 1 -3, 2013. Though the videos are fairly long, there is […]

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Chronic Joint Pain and Muscle Pain are the Main Issue

Posted on June 16, 2013

It was a relief when Jess Covey finally got a diagnosis of Ehlers Danlos Syndrome. KINGSTON – By Michael Lea, Kingston Whig-Standard “It was about seven years ago that Jess Covey started to notice that something was wrong. The 26-year-old woman, originally from Athens, had moved to Kingston to attend the early childhood education program at St. […]

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EDS Support Group in Lancaster

Posted on June 10, 2013

This EDS Support Group  is promoting EDS Awareness in Lancaster. By EMILY PEIFFER   Staff Writer        epeiffer@lnpnews.com “You may notice something different when you pay for your morning coffee at  Turkey Hill. Donation jars for Ehlers-Danlos Syndrome, a rare genetic  disorder, are now at the checkout counters of four local Turkey Hill  markets. The driving force behind […]

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“Stand up” for Ehlers-Danlos Awareness – A motivational message…

Posted on May 24, 2013

It’s May 2013, and Ehlers-Danlos Awareness Month is here again.  This EDSer will motivate you to spread awareness in your sphere of influence. If each one of us speaks up whenever we can, it will make a difference. We encourage you to stand up for EDS all year long. Published by Beth “It is May again; time […]

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EDS Month Proclamation in Massachusetts

Posted on May 17, 2013

Raising awareness By Ann Reily – The Daily News Diana has been working continuously as an advocate for those with Ehlers-Danlos Syndrome. “Thanks to the efforts of a Newburyport woman, the governor has declared May as Ehlers-Danlos Syndrome Month in Massachusetts. Diana Cleaveland, who was diagnosed in 2010 after years of wondering what was wrong, […]

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Fight to be Upright! Charlie’s Campaign for Lifesaving Surgery

Posted on January 22, 2013

Charlie needs a life saving surgery in Maryland.  Many fund raising activities are raising the money needed. Charlie’s Battle with Ehlers-Danlos Syndrome, Cranio-Cervical Instability, and Chiari Malformation. Charlie was born with Ehlers-Danlos Syndrome (EDS), a genetic disorder he inherited from his mother, Christine. Individuals with EDS have a defect in their collagen, the main component […]

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