CYSTIC-L Lending Library

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To borrow any of these materials, email Ron Trueworthy at:
[email protected]
with your snail-mail address and a description of the materials you want to borrow. There may be a waiting list for some materials. Borrowers are asked to pay the postage to return the materials or send them to the next borrower.

Books (5/97)

(5/97) In the Shadow of Illness; Parents and Siblings of the Chronically Ill Child (by Bluebond-Langner, M.), Princeton University Press [1996], 328 p. See item 3A, BOOKS (Popular Accounts) above for descriptions of this book. Donated by Brenda Morey.

(5/97) Paula Is My Name (by David C. Howard) A first-person account by a person with Cystic Fibrosis. 195 pages; photographs; Lavender Publishing, Bay Minette, Alabama; 1996. Donated by Barbara Payles.

(5/97) Robyn’s Book; A True Diary (by Robyn Miller) A personal account of the life of Robyn Miller. 179 pages; ISBN 0-590-3787-4. Donated by Brenda Morey.

(5/97)- “A Time to Die”. See item 3A, BOOKS (Popular Accounts) above for descriptions of this book. Donated by Deborah Milanowski.

(5/97)- “We Are Not Alone; Learning to Live With Chronic Illness” (by Sefra Kobrin Pitzele), 283 pages; Workman Publishing, New York, 1986. Donated by Kim Payne.

(5/97)- “Living With Chronic Illness; Days of Patience and Passion” (by Cheri Register), 302 pages; The Free Press; A Division of Macmillian, Inc., New York, 1987. Donated by Kim Payne.

(5/97)- “Children’s Hospital” (by Peggy Anderson), 532 pages; Harper & Row, New York, 1985. The real stories of six children (including a 15 year old boy with CF) reported in a novelistic style. Donated by Kim Payne.

(5/97)- Alex, the Life of a Child. (by Frank Deford) A father writes the heart-wrenching true story of his daughter who died of CF. The author is active in the CFF. 196 pages; 24 cm; may be available free from the Cystic Fibrosis Foundation (see entry under organizations for address and phone number); Viking Press; New York; 1983. Donated by Ron Trueworthy.

(5/97)- “1996 Directory of Prescription Drug Patient Assistance Programs”; a pamphlet published by Pharmaceutical Research and Manufacturers of America (PHRMA), 1100 Fifteenth Street, N.W., Washington, DC, 20005; 1995. Donated by Ron Trueworthy.

Lists company programs that provide drugs to physicians whose patients could not otherwise afford them. Programs are listed alphabetically by company. Each program entry includes information about how to make a request for assistance, what prescription medicines are covered, and basic eligibility criteria. Note that these programs serve the neediest patients, others need not apply.

(5/97)- My Cystic Fibrosis Book (by Anna Mandolfo, a C.F. patient in the United Kingdom) Explains CF to kids; illustrated with fozzy little green guys kids can relate to. Topics covered are: CF, treatment, physiotherapy, exercise, nutrition, enzymes, clinic check ups, hospital visits, friends, school, and daily activities for good health. The pharmaceutical company that puts it out is Solvay Pharmaceuticals, Inc., Marietta, Georgia 30062. The book will be made available to CF centers and can be obtained through CF caregivers. Donated by Solvay Pharmaceuticals, Inc.

Video Tapes (5/97)

1995 CFRI/IACFA Conference Video Tapes. See item A4. (BOOKS, PAMPLETS, AND VIDEOS AVAILABLE FROM DRUG AND EQUIPMENT MANUFACTURERS OR CYSTIC FIBROSIS ORGANIZATIONS) above. Donated by Ron Trueworthy.

(5/97)- 1996 CFRI Conference Video Tapes. See item A4. (BOOKS, PAMPLETS, AND VIDEOS AVAILABLE FROM DRUG AND EQUIPMENT MANUFACTURERS OR CYSTIC FIBROSIS ORGANIZATIONS) above. Original tapes provided by CFRI thru Ray Goldstein.

(5/97)- Making CPT Easier. A homemade video by Robin Jutzi (an adult member of CYSTIC-L) demonstrating ways of coping with the irritations (noise, overheating, eats up time) and costs of using mechnical percussors. Makes up in thoughtfulness, what it lacks in production values. About 40 minutes. Donated by Robin Jutzi.

Lung Transplant Video Tape. News media coverage of 1995 double lung transplant in Canada. Run time about 36 minutes. Donated by Amy McKay.

(5/97)- Starting Your Pulmozyme Therapy. 1994 promotional video by the manufacturer, Genentech. Run time about 13 minutes. Donated by David Balsam.

The ThAIRapy Vest Video Tape. See item A4. (BOOKS, PAMPLETS, AND VIDEOS AVAILABLE FROM DRUG AND EQUIPMENT

MANUFACTURERS OR CYSTIC FIBROSIS ORGANIZATIONS) above. Donated by American Biosystems.

The Flutter Video tape. See item A4. (BOOKS, PAMPLETS, AND VIDEOS AVAILABLE FROM DRUG AND EQUIPMENT MANUFACTURERS OR CYSTIC FIBROSIS ORGANIZATIONS) above. Donated by Nellcor, Puritan, Bennett.

Video Tapes Available from the Cystic Fibrosis Foundation (5/97) See item A4. (BOOKS, PAMPLETS, AND VIDEOS AVAILABLE FROM DRUG AND EQUIPMENT MANUFACTURERS OR CYSTIC FIBROSIS ORGANIZATIONS) above. Donated by the Cystic Fibrosis Foundation.

Audio Tape (5/97)

“Breath Sounds”, a medical training tape containing 50-some different breath sounds. Not for the casual listener. A stethoscope is a must. Donated by Barbara Payles.

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