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@colleenyoung

Have you experienced feelings of burnout while searching for a diagnosis?

Researchers from Mayo Clinic and University of North Carolina want to hear about your current or past experiences of burnout during the search for a diagnosis.

To participate, you must have seen a geneticist or genetic counselor in the past, or you must be scheduled to see one in the future. Read more (https://connect.mayoclinic.org/discussion/help-researchers-understand-patient-burnout-searching-for-a-diagnosis/)

Interested?
If you want to help researchers understand patient burden and risks of burnout, click the link below and complete the 10-minute survey to see if you are eligible:
https://uncg.qualtrics.com/jfe/form/SV_1U2UBr376oEoDsy
If eligible, researcher Simone Hetherington (smhethering@uncg.edu) will contact you to schedule an interview.

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Replies to "Have you experienced feelings of burnout while searching for a diagnosis? Researchers from Mayo Clinic and..."

I just signed up. I'm currently trying to get my adverse reaction to Letrozole addressed. Other women on this site had the same experience I did. It took weeks to get my severe adverse reaction to the steroids I was infused with addressed as something other than "depression," which obviously does not explain 72 hours of cold sweats after each infusion. That's on a par with calling me "hysterical," which they did not do but might as well have. I was not told that docetaxel was in a solution of ethanol, which caused me to be drunk after 13 years of sobriety. Good thing I wasn't driving. I couldn't even walk out on my own steam after infusion, and did not know why until after my 3rd infusion, when I Googled "drunk" and "chemo." Although the docs keep saying "all patients are different," I'm pretty sure mainlining ethanol has a predictable effect. Thank God my husband always drove. Involuntary intoxication is a defense to drunk driving or intoxication manslaughter -- but not so for civil liability for the medical providers, so it is in the providers' best interests to give patients that information out of prudent self-interest if nothing else. Even oncologists who get breast cancer are surprised by the patient experience, so clearly they didn't listen to their own patients. That disgusts me, particularly when those oncologists monetize their cancer patient experiences by creating Youtube channels and writing books. What about all those women they did not listen to?