Archive for the ‘Latest Updates’ Category

EDS Awareness Booth at the 2013 EDNF Conference

Posted on May 11, 2013

Don’t miss the 2013 EDNF Conference in Providence, RI. will be a sponsor again this year.  Stop by our booth to learn more about our free support group program! Here is a summary of the 2012 conference experience: Attendees witnessed several exciting announcements at the 2012 EDS learning conference! It was announced that the […]

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How to get the most out of 2013 EDS conference

Posted on April 30, 2013

In this article, Donna reflects on her past conference experience, and shares tips on how to get the most out of the 2013 EDNF conference.  Suggestions include: bring printouts of the speakers’ handouts to take notes on (in a binder) bring your spouse or family member (encourage them to attend sessions & meet other EDSers) […]

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Different Types of Ehlers-Danlos

Posted on January 25, 2013

More specifics about the different forms of EDS Hi, I am Bethanie Thorn and this is my explaination of Ehlers-Danlos Syndrome. My Facebook and E-mail as Promised: Facebook –!/BethaniesBattle?fref=ts E-mail –

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“No Matter What’s Going on With My Brain There’s Always Music in My Head.”

Posted on January 18, 2013

The Bellmawr resident writes edgy, melodic rock songs with titles like “Palinopsia,” the name for an optical disturbance that’s among the debilitating symptoms of Ehlers-Danlos Syndrome.About four years ago, Fatale was diagnosed with the connective-tissue disease, which creates havoc in the joints, spine, and elsewhere. After surgeries left her barely able to move her head, […]

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Explaining Disability​-Part of What Makes Us Disabled

Posted on January 17, 2013

Author: Jonathan  RodisPresident-Massachusetts  Chapter of the National Marfan FoundationHead-EDS Massachusetts  and New England Support Group “I wanted to share with you something I wrote to  help everyone understand what it is like to be disabled, what it is like to  have an invisible disability, what to do if you find yourself trying to explain  your […]

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Dad Discovered With EDS While Tying His Shoes

Posted on January 16, 2013

A DAD from Sheffield lived with a rare disease for four decades – until he was diagnosed by a doctor who spotted him tying his shoelaces with his wrists bent at an unusual angle. Ian Redfern’s six-year-old daughter Evie also has Classical Ehlers Danlos Syndrome, which causes her to bruise and damage her skin easily. […]

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A Dog with Ehlers-Danlos Syndrome?

Posted on January 13, 2013

This is an incredible story of a Dog with Ehlers-danlos Syndrome? The dog was diagnosed with EDS by Dr. Marianne E. Bailey who is a veterinarian at South Arundel Veterinary Hospital in Edgewater, MD. “My veterinarian says he thinks my dog may have Ehler Danlos Syndrome. She has really stretchy skin and, when she gets […]

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