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Surprise! I'm still not dead! Okay, sure, I was born with an incurable genetic disease and, yes, I have faced terminal illness two times but . here I am! And I'm ready to speak! I've now been navigating the Western medical maze for over three decades. Along the way, I've had to learn some pretty painful lessons about how to advocate for myself and what happens if I don't. I also know how scary and disorienting illness can be-I have a lot to say about finding peace and acceptance, no matter what your diagnosis. I offer you my advice, my humor and my personal journals as a window into the often…mehr

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Surprise! I'm still not dead! Okay, sure, I was born with an incurable genetic disease and, yes, I have faced terminal illness two times but . here I am! And I'm ready to speak! I've now been navigating the Western medical maze for over three decades. Along the way, I've had to learn some pretty painful lessons about how to advocate for myself and what happens if I don't. I also know how scary and disorienting illness can be-I have a lot to say about finding peace and acceptance, no matter what your diagnosis. I offer you my advice, my humor and my personal journals as a window into the often quiet world of living with illness. Whether you are a patient, family member or medical professional, chances are you will find something between these pages that you never knew. Medicine is a complicated maze. The time has come for a medical revolution-let's do it together!
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