Author: Claire Wineland with Chynna Bracha Levin

ISBN: 978-0-9836406-

Claire Wineland is unlike any teen you will probably ever meet. Despite living with cystic fibrosis and all of the difficulty that entails, she manages to maintain an incredible zest for life and a passionate advocacy for other individuals who are affected by this debilitating disease.

Throughout this incredibly upbeat story, Claire manages to detail some of the challenges she has faced in her short life with a candor that is unparalleled. She describes some of the technical medical terms in ways that are simple to understand and helps the reader see just why CF is such an isolating disease for patients and their families. This is one of the things that spurred Claire to create a way for these families to network and pool resources.

Claire survived a harrowing ordeal following a routine surgery that left her in a coma and near death at one point. Upon emerging from the coma, she realized that her life was forever changed. She was unable to attend school even after she recovered but she was determined to continue to engage in the things she enjoyed and be part of a social network.

Ultimately, she decided that the gift cystic fibrosis offered to her was a chance to advocate for others with the disease and teach the world about it. She created a foundation to help families affected by CF and has given a TED talk as well as offered presentations to high schools in order to share her positive message. She has decided that, for her, cystic fibrosis is a blessing and the book reflects this “glass half full” mentality.

For anyone touched by a chronic illness, Claire’s story is a powerful message of how to find the positive in your life and use it with a passion.

Claire has designed a web-based tutorial for those living with cystic fibrosis called CF University. It offers a comprehensive look at tactics for dealing with everyday life as well as the challenges of multiple hospital stays. There is a section that connects families with children who have cystic fibrosis, facilitating the sharing of valuable resources. Claire says that the goal of this endeavor is, “Sharing everything I have learned and providing a forum for positive and supportive members to share their experiences in a space that is open and fun for everyone….”

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