Day Twenty, Cushing’s Awareness Challenge

This is one of the suggestions from the Cushing’s Awareness Challenge post:

What have you learned about the medical community since you have become sick?

This one is so easy.  I’ve said it a thousand times – you know your own body better than any doctor will.  Most doctors have never seen a Cushing’s patient, few ever will in the future.

If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions.

This is your life, your one and only shot (no pun intended!) at it.  Make it the best and healthiest that you can.

When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online  and found a medical treatment that even his own doctors didn’t know. It saved his life.

In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.


One Response

  1. So very true about it "being our only shot". After being learning I had Cushing's and then later learning all about it thanks to Cushing's Help and the support of my fellow "Cushies". My husband and I have often talked about how the doctors will have lots of patients and if they get it wrong and one of us slip through the cracks they have a new patient in the waiting room the next day. Our families are left wondering why we are no longer here.

    The value of knowing about what you have enables you to understand the process, communicate more effectively, participate with knowledge, ask questions, select options for care that are right for you, helps you to explain the condition to those you love or care about and it gives you some small (very small) sense of control over your life instead of being completely overpowered by the illness (any illness).

    As always thanks Mary O for giving all of us so much!

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