Posts Tagged ‘Dealing with EDS’

Discovery Health Channel: Ehlers-Danlos Syndrome

Posted on November 1, 2013

Discovery Health Channel presents an episode about Ehlers-Danlos Syndrome. This TV segment portrays Alberto Friedman’s family of EDSers and describes the challenges they face.  It addresses EDS Hypermobility and Vascular types.

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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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Jordan has Seen His Share of Hospitals.

Posted on January 12, 2013

Jordan is a brave young man. At nine years old he sees the need for giving to others, even while he is struggling himself with Ehlers-Danlos Syndrome. “Jordan Corvin, Saugerties boy brings joy to Columbia Memorial patients. Jordan suffers from Ehlers-Danlos Syndrome, a disorder affecting connective tissues that causes acid reflux and seizures. He goes […]

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Poppy Urgently Needs Her Intestines and Stomach Replaced

Posted on January 9, 2013

What an incredible story of a 5 year old girl who got to come home from the hospital for Christmas. How difficult EDS can be to even the youngest of our community!   Click picture for full article We welcome comments and Likes regarding this story

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Laura’s “Can-Do” Spirit Persists with EDS

Posted on December 4, 2012

“Lyons received an associate’s degree from LLCC in May. Making the greeting cards keeps her busy and makes her feel useful”, she said. Among cards are ones with sayings ‘Congrats On Your New Job’ (with three-dimensional flowers), ‘Sending Thanks Wishes with Gratitude and Appreciation For You’ and ‘Wishing you all the happiness that your holiday […]

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