5 S.T.E.P.S. to Being Your Own Patient Advocate

Cristy L. Kessler, EdD, with Sharon K. Miller (2013)
Buckskin Books, Tucson, Arizona

Cristy Kessler should be dead. The fact that she’s not is because she took charge of her own medical care. When she took it upon herself to find out why she had spent her lifetime battling pain and illness, Kessler embarked upon a journey of discovery in which she endured multiple treatments and procedures that resolved some, but not all, of her issues. Finally, armed with a diagnosis of multiple autoimmune diseases, she took charge and, with the help of a powerful team of doctors, Kessler identified the treatment that could save her life, a treatment denied by her insurance company and prohibited in the United States by the FDA.

A Note from Sharon:
I have known Cristy Kessler since she was about fourteen years old and a student in my husband’s ninth grade Geography class. From the outset, he was certain that she was a young woman with great promise, and she has not disappointed. We watched her struggle for many years with undiagnosed health issues and a lifetime of pain, in spite of which, she kept her sense of humor and her desire to learn and grow personally and professionally.

5 S.T.E.P.S. to Being Your Own Patient Advocate is her story, not mine. My name is on the cover because I was fortunate enough to be her editor and publisher and she wouldn't have it any other way. She not only tells her story in this book, she tells her readers how they, too, can take charge of their own medical care and work proactively with their doctors to find diagnoses and treatment. Five easy steps: Sensibility, Teamwork, Education, Patience and Perseverance, and Sustainability.

When she decided to take it upon herself to find out what was wrong, she transformed her relationship with her doctors and helped them to reach accurate diagnoses of vasculitis, scleroderma, aknylosing spondylitis--three autoimmune diseases, any of which alone can be fatal. In search of treatment, she learned that an autologous stem cell transplant, that is, using her own stem cells, was her only hope. Unfortunately, the FDA and her insurance company said NO.

Ultimately, through the support of a family and friends' network, funds were raised for her to get the treatment outside the United States. It is not an exaggeration to say that she would be dead now if she had not gotten the treatment. For some readers, this book could be the difference between life and death, just as it was for Cristy.