Prader-Willi Syndrome: How Parents and Professionals Struggled and Coped and Made Genetic History - Softcover

Hernandez-Storr, John

Softcover

ISBN 10: 0997178302 ISBN 13: 9780997178302

Publisher: John Hernandez-Storr, 2016

Synopsis

On March 28, 1971, Fausta Deterling gave birth to a boy. Curtis was floppy and had little appetite. When he was five months old, a doctor told his parents that Curtis had Prader-Willi syndrome. He told them that when Curtis was a toddler he would develop a huge and life-long appetite. He told them Curtis would become quite obese, would not be 100 percent mentally, and would not live past his twenties. And there was no cure or treatment. Fausta and her husband, Gene, did not accept this. Neither did a small band of professionals. As they struggled with the syndrome, another group of researchers discovered clues that PWS had a genetic cause. Their search deepened into a worldwide genetic mystery, whose resolution would change the textbooks.

About this title

About the Author

John Hernandez-Storr is the father of a girl with Prader-Willi syndrome. He has a BA in History from Brown University and a JD from Columbia Law School. He lives in the Los Angeles area.

Review

"Deftly chronicles the advancement of scientific knowledge about Prader-Willi syndrome and its effects on families... A dynamic, journalistic account."--Kirkus Reviews. "This is a book that can be a source of knowledge and inspiration for everyone who lives with or studies Prader-Willi syndrome, whether a parent or sibling, a care provider, a teacher, a doctor, or a scientist."--Suzanne B. Cassidy, MD, editor of Management of Common Genetic Syndromes

Edition details

• Publisher: John Hernandez-Storr
• Publication date: 2016
• ISBN 10: 0997178302
• ISBN 13: 9780997178302
• Binding: Paperback
• Language: English
• Number of pages: 256