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4 Life Lessons I’ve Learned From Having Ehlers-Danlos Syndrome

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source: The Mighty

year: 2016

authors: Sarah Houghton


From all outward appearances, most people would never know I had a rare genetic disorder. I work a full-time job as a director for a public library. Standing in front of you, I give no outward appearance of having anything “wrong” with me on most days. I lead a full life with a loving partner, a kind group of amazing friends and colleagues, and involvement in nerdy activities outside of work.

I am a month away from my 40th birthday and have lived my entire life with Ehlers-Danlos syndrome, though I was only diagnosed 12 years ago after a couple years of ER- and specialist-hopping with a dozen different incorrect diagnoses, tens of thousands of dollars, and no answers. Genetic testing for the win!

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