CYSTIC FIBROSIS BOOKS
A Parent's Guide to Cystic Fibrosis (by Burton L. Shapiro, PH.D. and Ralph C. Heussner, Jr.) It is a great update to David Orenstein's book of 1989. University of Minnesota Press, 2037 University Avenue, Southeast, Minneapolis, MN 55414; 1991
Alex, the Life of a Child (by Frank Deford) A moving story of love and courage, but the course of Alex's disease is fortunately not the norm as survival has increased dramatically with new medical advances. A personal account of the life of Alexandra Deford. 196 pages; 24 cm Viking Press; New York; 1983.
Cystic Fibrosis (by Pamela B. David, editor) Part of the series "Lung Biology in Health and Disease." 551 pages; illustrations; 23 cm M. Dekker; New York; 1993.
Cystic Fibrosis (Lynn M. Taussig, editor) This book contains what are probably the best descriptions of the medical complications of Cystic Fibrosis. It was written before the current revolution in understanding of Cystic Fibrosis genetics, so there is very little discussion of the underlying causes of the disease. It is a bit grim, but contains valuable information. 498 pages; illustrations; 21 cm Thieme-Stratton; New York; 1984.
Cystic Fibrosis (Margaret E. Hodson, A.P. Norman, J.C. Batten, editors) 282 pages; illustrations; 24 cm Bailliere Tindall; London; 1983.
Cystic Fibrosis: A Guide for Patients and Family (by David M. Orenstein) A good, general, easy to read and slightly outdated guide for the "lay person" which can be ordered from any bookstore. Good reference for those new to Cystic Fibrosis. 239 pages; illustrations; 24 cm Norton; New York; 1988.
Fibrosis: A Manual of Diagnosis and Management (prepared by Mary C. Goodchild and John A. Dodge) Clinical Manual.
Cystic Fibrosis Research Trust. 2nd edition. 212 pages; illustrated; 22 cm Bailliere Tindall; London, Philadelphia; 1985.
Cystic Fibrosis - Current Topics (J.A. Dodge, D.J.H. Brock, and J.W. Widdicombe, editors) Volume 1; illustrations; 24 cm J Wiley and Sons; New York; 1993.
Cystic Fibrosis: The Facts (by Ann Harris and Maurice Super) 2nd edition. Part of the Oxford Medical Publication series. 118 pages; illustrations; 23 cm. Oxford University Press; Oxford, New York; 1991.
Gillian: A Second Chance (by Veronica Stauton) A persona account of the life of Gillian Stauton 240 pages; illustrations; 21 cm. Blackwater Press; Dublin; 1991.
Give Me One Wish (by Jackie Gordon) A personal account about the life of Christine Gordon. 350 pages; illustrations; 25 cm. Norton; New York; 1988.
Life in My Hands (by Daub Lab) A personal of the life of the author. LabPro Press, PO Box 156, Thousand Oaks, CA 92276. Telephone (619) 343-0170. Costs between $8-$15; may not still be print. "I wanted to share the name of a good book I read by a guy with CF. It's been a while since I read it but I think he wrote it in the last year or so before he died from CF (in his 30s?). The main point of the book is in the title and that's why I recommend it."
The Power of Two (by Isabel Stenzel Byrnes & Anabel Stenzel) A twin
triumph over cystic fibrosis. Born in 1972 in California to Japanese and
German immigrant parents, we are identical twins who recount our lifelong
struggle to pursue normal lives with cystic fibrosis while grappling with
the realization that we will die young. This coming-of-age story reveals our
tumultuous battle against our bodies, our desire for independent identities
and our gradual acceptance of being loveable despite being physically
different. In the end, we discover that our deep-seated dependence on each
other has allowed us to survive long enough to reap the benefits of
miraculous lung transplants. In the “Power of Two,” we share a life shaped
by cultural tradition, dedication from a family that would not give up, and
inspiration from others who have shared in the plight of having cystic
fibrosis. This memoir is rich in life lessons, depth and appreciation. For
more information go to
www.stenzeltwins.com
Sinus Survival - A Self-help Guide for Allergies, Bronchitis, Colds, and Sinusitis (by Dr Robert S. Ivker) Does not focus on sinus problems of the PWCF but it does not contain a lot of really good everyday kind of tips for keeping sinusitis down. G.P. Putnam's Sons, 200 Madison Avenue, New York, NY 10016; about $10.00; 1992
Spirit of Lo-An Ordinary Family's Extraordinary Journey... Life's dance on the edge of Mortality-By Terry and Don Detrich (Boomer's Book Club Pick)
Check out Boomer’s Book Club for links to some other great books about Cystic Fibrosis!
