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Being Built Wrong: One Woman’s Struggle with Ehlers-Danlos Syndrome


The following story was written in 2010 by my daughter Alexa who passed away on October 11 2011 from complications due to Ehlers-Danlos Syndrome (EDS). Most people do not even know that EDS exists and, for that matter, most doctors unfortunately do not understand it and often diagnose it as a psychiatric issue versus a disease/illness. I hope this story increases awareness of EDS and related disorders – perhaps it will inspire people to understand that many diseases are not observable and that they need to be more compassionate towards others.

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