Life Disrupted

May 5, 2008
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.

Starred review from May 1, 2008
Although illness memoirs and recovery books saturate the market, this one makes a contribution to the literature with its voice of a young woman dealing with a lifetime of chronic illness. Edwards, who is 27 and manages bronchiectasis, thyroid disease, and celiac disease, among other conditions, ably describes the realities of people living longer with chronic (often rare) illnesses. She strikes an appropriate tone so that her suffering comes across without becoming the focus. Instead, using her own life story, Edwards shares practical advice about going to college, looking for a job, finding a partner, and deciding whether to have children, all the while juggling demanding health issues. Her comments about the financial aspects of her illness are timely considering the current interest in universal health care. Order this gem pronto to round out your consumer health collections.Fran Mentch, Cleveland State Univ. Lib.

Copyright 2008 Library Journal, LLC Used with permission.

July 1, 2008
Ones twenties and thirties are a time for training, launching careers, starting families. For 27-year-old Edwards, there is also the matter of the genetic respiratory disease she suffers. In addition to having 1 of only 1,000 documented cases of PCD (primary ciliary dyskinesia), she has bronchiectasis, celiac disease, and thyroid disease. It has been difficult to tease out where one disease ended, and another began, and she has spent most of her life looking for explanations of my illness that match my experience of illness. Her research and interviews with others reinforced that she isnt alone in her predicament. She cites real lives to illuminate such matters as the pitfalls of explaining rare and/or invisible illnesses and to address the financial downside of chronic illness with flexible approaches to enabling chronically ill workers to stay in the workforce. Soberingly, she imparts that more than 75 percent of marriages in which chronic illness figures end in divorce. Still, theres that other 25 percent.(Reprinted with permission of Booklist, copyright 2008, American Library Association.)