Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties

We usually associate chronic disease with the elderly. But Edwards is both young and chronically ill—only 25, she has a rare genetic respiratory disease, primary ciliary dyskinesia, whose symptoms resemble those of cystic fibrosis. She navigates her very full personal and professional life with fortitude, a sense of humor and without a trace of self-pity. As she illustrates through her own story and those of others with illnesses ranging from fibromyalgia to type 1 diabetes, being young and ill is a complication unto itself: “Better technology means chronically ill kids grow up and enter an adult system unprepared for them.” But Edwards's story is less about being ill than about being healthier. It is about getting up in the morning and dealing with what everyone else deals with, and more. Suffering did not make her a better person, she says. It made her “a better sufferer.” Edwards is able to use her own treatment experiences to help others facing illness. It's also made her wise, generous and a terrific storyteller. (July)