Ph.D. - Understanding Cystic Fibrosis (Understanding Health and Sickness Series)
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Understanding Cystic Fibrosis (Understanding Health and Sickness Series)
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Cystic fibrosis (CF) is the most common genetic disorder in the white population. Since the discovery of the CF gene in 1989, scientists have learned a great deal about the biology of this disease, which strikes one child in every 3.300 births. With the gene pinpointed, scientists are now working on ways to replace it and are developing better tests for early diagnosis.Understanding Cystic Fibrosis charts the progress that has been made in identifying the mutations that cause CF and in understanding how these genetic errors cause a disease whose symptoms can range from mild respiratory distress to life-threatening lung infections.This book features a review of current available treatments; research that can lead to therapies and perhaps a cure; advice and resources for families and patients; how to work best with health-care providers and HMOs; the history and diagnosis of CF; who gets CF and why; how CF affects the lungs, intestines, and other organs; and a list of organizations, support groups, and resources.
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Understanding Cystic Fibrosis Understanding Health and Sickness Series
author
:
Hopkin, Karen.
publisher
:
University Press of Mississippi
isbn10 | asin
:
0878059679
print isbn13
:
9780878059676
ebook isbn13
:
9780585247083
language
:
English
subject
Cystic fibrosis--Popular works.
publication date
:
1998
lcc
:
RC858.C95H67 1998eb
ddc
:
616.3/7
subject
:
Cystic fibrosis--Popular works.
Page i
Understanding Cystic Fibrosis
Page ii
Understanding Health and Sickness Series Miriam Bloom, Ph.D. General Editor
Page iii
Understanding Cystic Fibrosis
Karen Hopkin, Ph.D.
Page iv
Copyright 1998 by Karen Hopkin All rights reserved Manufactured in the United States of America 01 00 99 98 4 3 2 1 The paper in this book meets the guidelines for permanence and durability of the Committee on Production Guidelines for Book Longevity of the Council on Library Resources.
Library of Congress Cataloging-in-Publication Data
Hopkin, Karen. Understanding cystic fibrosis / Karen Hopkin. p. cm.(Understanding health and sickness series) Includes index. ISBN 0-87805-966-0 (cloth : alk. paper).ISBN 0-87805-967-9 (pbk. : alk. paper) I. Cystic fibrosisPopular works. I. Title. II. Series. RC858.C95H67 1998 616.3'7dC21 97-38646 CIP
British Library Cataloging-in-Publication data available
Page v
Contents
Acknowledgments
vii
Introduction
ix
1. Who Gets Cystic Fibrosis and How?
3
2. CF: History, Symptoms, and Diagnosis
20
3. The Molecular Basis of CF
31
4. How CF Affects the Body
43
5. Current Treatments and Health Care Issues
55
6. Coping with CF
75
7. Future Treatments, Potential Cures
83
Appendices
A. The Internet
95
B. Support Groups, Newsletters, and Mailing Lists
97
C. Organizations
99
D. CFF Research and Treatment Centers
100
Glossary
117
Index
125
Page vii
Acknowledgments
I would like to thank my editors at the Journal of NIH ResearchBruce Agnew, Carol Ezzell, and Keith Haglundfor asking me to write an article about the latest experimental treatments for cystic fibrosis (CF). That article effectively launched this book. Special thanks go to Bruce for his unwavering support and editorial guidance and to Keith for slogging through my early drafts and working tirelessly to help make the manuscript readable and for allowing me to take two days off from work to write the book.
I would also like to thank the researchers who gave of their time to help me formulate the original JNIHR article, which formed the backbone of chapter 7: Richard Boucher, David Bedwell, Mike Welsh, Jeff Smith, Ron Crystal, Lap-Chee Tsui, James Wilson, Paul Fischer, and Alan Smith. Special thanks go to Michael Rock of the University of Wisconsin Children's Hospital in Madison for taking time out of his busy scheduleand his vacationto review the manuscript carefully and to Lap-Chee Tsui, who somehow managed to read through the book and offer insightful comments while traveling between conferences. I am also grateful to Scott Tebbutt of the University of Otago in Dunedin, New Zealand, for his helpful discussions on CF animal studies and for pointing me toward the most informative CF Web sites.
Special thanks also go to the good folks at University Press of Mississippi: to Miriam Bloom for her confidence and her thoughtful suggestions on an early draft of my first chapter and to Seetha Srinivasan for her encouragement and her patience in waiting for the final manuscript. I thank Regan Tuder for her clear illustrations and Jeff Smith of the University of Iowa College of Medicine in Iowa City for permission to reproduce the striking electron micrographs of lung cells.
Thanks go as well to the people at the CF Foundation who directed me to the most exciting research and supplied me with a
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