Cystic Fibrosis » (Updated)

Harris, Ann (Univ of Oxford); Super, Maurice (Royal Manchester Children's Hospital)

Although cystic fibrosis is one of the most common inherited diseases, most people know very little about it. Written for parents and others who know or care for persons with CF, this book clearly describes all known aspects of the disease: how the various parts of the body are affected, how the symptoms are treated, its genetics, and major avenues of current research. Also included are accounts written by children with the disorder. It is a unique and helpful guide for anyone who works with or cares for children with CF.

Susanna A. McColley

This third edition offers a comprehensive and updated description of cystic fibrosis (CF), including genetics, daily care needs, and recent advances in diagnosis and treatment. "Its stated purpose is to provide current factual information about living with CF; new information is emphasized, and a chapter on genetics has been added. This is a worthy objective, especially in light of the rapid advances in CF research. "The book, targeted for a lay audience, is written at a sophisticated level, although a scientific background is not necessary to understand the principles involved. It also would make an excellent introductory text for paramedical personnel, medical students, and even physicians who are not familiar with CF care. "It is nicely illustrated, and several tables add to the readability. The utility of some illustrations is uncertain with respect to a lay population (for example, lung scans). It is a small paperback book with an appealing cover, adding to its accessibility. "This book is a very comprehensive account of cystic fibrosis and CF care. Although the reader need not have a scientific background, it is written at a sophisticated level and is therefore not appropriate for all CF caregivers. However, it is recommended reading for educated CF caregivers and patients and paramedical personnel, particularly those who may be new to a multidisciplinary CF team. It would also give an excellent introduction to medical students and physicians about this disease.

1 Introduction and making the diagnosis 1

2 How cystic fibrosis affects the lungs 9

3 How cystic fibrosis affects the digestive system 23

4 How cystic fibrosis affects other organs 31

5 Daily treatment for cystic fibrosis 37

6 The cystic fibrosis team 59

7 Nutrition in cystic fibrosis 63

8 Micro-organisms in the cystic fibrosis lung 69

9 Cystic fibrosis and the family 75

10 Cystic fibrosis and school 85

11 Growing up with cystic fibrosis 93

12 Future therapies 99

13 Genetics of cystic fibrosis 105

14 Genetic counselling in cystic fibrosis 119

15 Survival 131

App. 1 Further reading 133

App. 2 Cystic fibrosis associations 135

App. 3 Glossary 141

Index 147