Thursday, October 13, 2011

SCAD Ladies Stand Up: Stories of Patient Empowerment

My partner in crime, the other half of our "Dissection Duo," aka my friend Katherine--she and I, and Dr. Hayes (the courageous cardiologist who agreed to take us on as a group and study us--at 100% Katherine's instigation), and several other SCAD survivors tell our stories here:

The SCAD Ladies Stand Up: Stories of Patient Empowerment (note: it's a PDF).

Thanks to John at Inspire, and the whole team, who worked to put this piece together and publish it.


  1. WOW this is a GREAT patient action empowerment story. I have had all the same emotional experiences online and in real life in my meningioma community. I want to do something similar to push for a new standard drug therapy for low grade brain tumor survivors.
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  2. Thanks! As I'm sure you know, those of us with rare conditions really have to be our own experts; we end up knowing more about our conditions than most medical people we see, a lot of whom have never heard of our whatever-it-is and have no idea, therefore, what the best (or any) treatment options may be.

    Most non-medical people haven't heard of whatever-it-is, either, and doctors shouldn't be ashamed that they can't know everything--no one can.

    What they can do, though, is be honest about how much they don't know and be willing and able to open up and let patients lead the way when we say, "We'd like this disease or treatment researched and if successful, implemented."