Why we want to tell these stories¶
We want people to understand the issues our patients face when they come to us for presymptomatic testing. They include some of the most difficult personal situations our patients encounter, and some of the knottiest ethical situations we have faced.
In addition, in the course of this clinical work we have realized that many of our patients’ experiences speak to universal concerns. Life and death, carpe diem and deferred reward, hope and futility, fidelity and self-gratification—these and many other crucial tensions are illustrated in these stories.
Who’s “we”?¶
Stacey Krueger, MSW, LCSW, is Program Manager of the Huntington’s Disease Center of Excellence at Washington University in St. Louis. She manages the whole endeavor, and (most relevant for this book) provides genetic counseling to our presymptomatic testing participants. She’s also just a wonderful human being.
Confidentiality¶
The stories told herein are realistic portrayals of real patients. However, we have changed the names and other details, and sometimes conflated more than one patient into a single story, so as not to reveal anyone’s identity.
Thank you ...¶
... to all of you, patients, family members, and fellow clinicians, who have taught us about the human side of Huntington’s disease.
KJB, 27 Jan 2017