Preface

Here is a collection of incredible stories: the stories of men, women and children who suffer from uncertainty, misdiagnosis, a lack of options and in some cases tragic loss. This is also a collection of stories of hope and the search for answers, truth, understanding and options. Overall, they reveal the raw interface between knowing and not knowing, and our search as humans to understand and strive for the best.

We give thanks first to the brave individuals who were willing to share their stories. They offer us a window into this world of the diagnostic odyssey: a sometimes quick and effective label and other times a very long and frustrating journey. These are the pioneers in a new land of promise. But they are the ultimate pragmatists as well