Posts Tagged ‘Managing Ehlers-Danlos’

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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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This Young Woman Dislocates Her Shoulder Up to 10 Times a Day By Just Sneezing!

Posted on January 1, 2013

Lauren has not been diagnosed with EDS yet. But she has many of the symtoms.  Trying to work with this disorder can be difficult. “- This Genetic condition means  Lauren’s collagen is too weak to support her joints – She goes to work  at McDonalds even when she is in pain – Doctors dislocated Lauren’s […]

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Practical Parenting Tips for those with Physical Limitations

Posted on September 20, 2012

by Jennie Macdonald  As someone who suffers from two chronic illnesses (Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome) that include fatigue and joint pain as my two major limitations, I understood the extreme need to be efficient with my time and energy in my early years of parenting. For me, a main priority was to […]

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