Prader-Willi Syndrome by
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 something called Prader-Willi syndrome. He told them Curtis would develop a huge appetite as a toddler, would become quite obese, would not be 100 percent mentally, and would not live past his twenties. There was no cure or treatment, the doctor said. Fausta and her husband, Gene, did not accept this. They banded with other parents, and with a handful of professionals, to try to make better lives for their children.The small number of professionals interested in Prader-Willi syndrome made some gains, although the syndrome remained obscure. But in the 1980s Prader-Willi syndrome became the focus of a worldwide genetic mystery. And the resolution of that mystery would change the textbooks.
Prader-Willi Syndrome by
A Karger 'Publishing Highlights 1890-2015' title Over the past years, research into the Prader-Willi syndrome (PWS) and its treatment options has progressed enormously and new insights have greatly improved the quality of life of those affected. For many years, Urs Eiholzer has been engaged in the care of children with PWS and their families. He has published a great number of seminal scientific articles and contributions and supports a comprehensive, integrated treatment approach, taking into account both the biological and the psychological aspects of the syndrome. This easily understandable book is specifically suited for non-professionals and presents the clinical picture of the syndrome, its genetic cause, state-of-the-art research results and treatment options as used in the author's out-patient clinic. The text is illustrated with graphics and complemented by an abundance of pictures. This publication addresses not only the family members of the affected children, but also those who have contact with them - from the neighbor to the pediatrician.
Gordy and the Magic Diet by
Gordy and the Magic Diet is a triumphant story of one boy’s journey initiating a restrictive diet so that he can be like other children—happy and healthy. In the story, Gordy thinks he has a monster living inside him. His “monster” symbolizes the negative behavioral, physical, and emotional reactions the he experiences in response to certain foods. With the encouragement of his doctor, Gordy starts a special diet—a “Magic” Diet--in hopes of quieting his monster. Gordy learns how to have courage and willpower as he chooses to eat foods that help him feel great. This book was created specifically to help any child, regardless of the reason for the restricted diet, navigate the journey. Not only for families, but ideal for schools and medical professionals.
Ultra Violet by
Estimated to occur once in every 15,000 births, Prader-Willi Syndrome is a rare genetic disorder that includes features of cognitive disabilities, problem behaviors, and, most pervasively, chronic hunger that leads to dangerous overeating and its life-threatening consequences. Ultra-Violet: One Girl's Prader-Willi Story draws on dozens of intensive interviews to offer insight into the world of a young girl with Prader-Willi Syndrome. For Violet, Prader-Willi Syndrome impacts everything from family and social relationships to education to her own self-image. But with the persistence of her parents and the help of experts, she will eventually discover not just how to live with Prader-Willi Syndrome-but how to live as Violet.
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Robin Lacagnina, MLS
Pediatrics & Family Resource Library UR Medicine | Golisano Children's Hospital
Mucci Family Resource Library 1st Floor Lobby, Room 1.1156 Phone: (585) 275-7710 |
