Posts Tagged ‘kids’

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How Can Schools Better Understand Ehlers Danlos Syndrome?

Posted on March 30, 2015

The pressures from the school environment are difficult enough when a student is well.  EDS students have more challenges than the average student,and need the cooperation of the school administration and teachers.   By Jenny – Cheetahs In My Shoes “As both a parent of 2 children with Ehlers Danlos Syndrome (or if it isn’t, something […]

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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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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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