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To the Doctors Who Are Uninformed About Our Illnesses and Won’t See Us

key information

source: The Mighty

year: 2016

authors: Mish Rogers


I am beyond frustrated at this point. The top geneticist in my mid-sized Midwestern city has told me this before, too. I’ve traveled to EDS learning conferences and met with the doctors who created the diagnostic criteria for EDS-H, I’ve donated my DNA and photos of my facial structure to studies attempting to pinpoint genetic markers, I watched live as doctors announced the results of their May 2016 symposium to define the diagnostic criteria for EDS-H; heck, I’ve read the Wikipedia page that says, “Negative genetic test results do not rule out the diagnosis, since not all of the mutations have been discovered; therefore the clinical presentation is very important.” Yet, I continue to meet doctors who won’t treat us without a positive genetic test result.

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