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A Superhero Needs No Cape: A Remarkable Story of Dreams, Dedication and Desire (By Andy Lipman). Paperback: 253 pages, Publisher: PublishAmerica (June 26, 2006), ISBN: 141373152X    Written by Cystic-L member Andy Lipman!  Paul Morgan had one dream since he was a little boy—a dream to be a Major League Baseball player. One thing stands between him and his dream—Paul has cystic fibrosis. Paul’s early life is filled with the physical and emotional struggles of living with a disease that threatens to shorten his life. But then something “incredible” happens that changes his attitude forever. Though he incurs several setbacks, meets various skeptics and endures much pain along the way, his desire and determination give him a fighting chance to obtain a boyhood dream. This is a story of sorrow and triumph, reality and dreams, and what determination and desire can achieve. In the end, you’ll find yourself chanting his name, hoping that his dream turns from mere fantasy to miraculous achievement. Most of us have comic book superheroes with mystical capes that we read about and admire. Meet Paul Morgan—a young man who proves that a superhero needs no cape!
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David’s Promise: A Young Man’s Struggle With Cystic Fibrosis (By Kathy Sykes). Paperback: 228 pages, Publisher: Virtualbookworm.com Publishing (April 30, 2006), ISBN: 1589398491.    nbsp; 
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Cystic Fibrosis; The Ultimate Teen Guide (By Melanie Ann Apel). Cloth: 288 pages, Publisher: Scarecrow Press (March 28, 2006), ISBN: 081084821X.   Written by Cystic-L member Melanie Apel! From diagnosis to death, this book leaves no aspect of cystic fibrosis untold. Based on a series of interviews with young people with CF and their family members, the day-to-day dealings of life as a cystic fibrosis patient are described. Some of the topics covered include a description of the illness; a comprehensive discussion of who gets the disease and why; an explanation of the procedures involved in diagnosing CF; coverage of the arduous daily therapies involved in maintaining the life of a person with CF; and the challenges of dealing with CF-related diabetes. These teens’ stories reflect how they live their lives to the fullest, how they are not bitter about their situations, and how they look forward to new medications, more-effective therapies, and–one day soon–a cure. Also included are stories told by people, now in their 30s and 40s, having CF who are still alive and coping well with the disease, demonstrating that progress is being made and that they can hope to live beyond their teen years, something that wasn’t likely 20 years ago. This book is the ideal guide for any reader who wants positive medical information about CF, offering an extensive glossary and listings of books, websites, and organizations about Cystic Fibrosis.  
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Little Brave Ones : For Children Who Battle Cystic Fibrosis (By Carrie Lux). Paperback: 32 pages, Publisher: BookSurge Publishing (March 8, 2006), ISBN: 1419617052.   See a day in the life of a preschooler with CF. The author says “I am the mother of a child, born almost 4 yrs ago with cystic fibrosis, a disease which has changed our path in life. My book provides a common bond through pictures for CF children across the country and reminds us why we pray for a cure”.   
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The Shelter of Rainbows: Hope, Harmony, and Inspiration in Compassionate Healthcare (Edited by Dana Selenke Broehl and Amy Colonna Remillard). Paperback: 208 pages, Publisher: PublishAmerica (January 1, 2006), ISBN: 1424113083.    Edited by Cystic-L members Dana Broehl and Amy Remillard! The face of modern medical care has changed dramatically. Medical conglomerates have replaced private medical practices, and insurance companies have assumed the role of deciding who has access to healthcare. And yet, in spite of a system that often thwarts humanity and compassion, there are countless healthcare workers who believe that medicine should not be a business of finances and insurance, but a matter of tending to the patient’s body and spirit. These healthcare workers are the true heroes of modern medicine, for they embrace hope, love, and laughter and go beyond the call of duty to care for their patients. The Shelter of Rainbows is a collection of short stories that honors these individuals as the cornerstones of compassionate medicine. Some stories are CF related, but about half are not. From the CF corner, I am sure you will recognize some of the authors and doctors. From Cystic-L, we have Fred Wilson, Amy Remillard, Paula Woodhouse, Carol Sweeten, Sam and Gloria Feinstein, Jeni Hall, Amy Ingram, Penny Stroud, and James Binegar. The CF doctors and nurses who are recognized in the book are Dr. Julie Biller, MaryEllen Freeman, Dr. Carolyn Denning, Dr. Ruben Diaz, Dr. Elaine Mischler, Dr. David Hicks, Joanne Fiero, Lynn Goldman, and Mary Helmers.   
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A Little Love Story : A Novel (By Roland Merullo). Hardcover: 288 pages, Publisher: Shaye Areheart Books (August 9, 2005), ISBN: 1400048672.   There is nothing little about this love story. It is big and heroic and beautiful and tragic. It is the story of life and death and demons and ghosts, told by a man mourning the death of his first lover, and finding himself improbably attracted to a woman who is, herself, dying. After meeting literally by accident, Jake and Janet’s first date is notable for his quirky, nervous humor and her persistent, wracking cough, caused by the cystic fibrosis that has reached its end stage. Such obstacles, however, don’t prevent them from falling profoundly and helplessly in love. As Janet approaches her final days, Jake’s plans to ensure they have a future together are nothing short of Herculean. Writing with serene passion and gentle humor, Merullo powerfully reveals both the resiliency and fragility of life and love, yet he has done himself a great disservice by giving his sumptuous novel such a simple title, for readers may erroneously assume it’s a piece of fluff. Nothing could be further from the truth. This is not a little love story. It is, quite utterly, grand.  
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Scardust (By Jennifer Devine). Reading level: All Ages; Paperback: 28 pages; Publisher: Authorhouse (June, 2005); ISBN: 1420864610; Dimensions: 8.5 x 8.5 x 0.1 inches Written by Cystic-L member Jennifer Devine! When a child has a scar, or scars, and they look into the mirror, do they see the “ugliness” of their scar, or do they see the beauty and strength behind the experience that put it there? Scars are physical marks that society has helped to make emotional insecurities. We must help our children to be sensitive and considerate to themselves and others that have physical markings, to help them understand and see the beauty behind the experiences that create the people we are today, and will become tomorrow. We can help people feel beautiful despite the scars that they perceive as making them “ugly.”   In Stock/Readily Available.
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Hey! Look at Me…! (By Kiel Lazich). Kiel Lazich died February 7, 2003 from Cystic Fibrosis at 22 years of age. This book contains 100 pages of his art, poetry and reflections. Cost: $10.00 plus $1.50 for shipping and handling. Sold by his family who state: “ALL MONEY goes to CF”. Checks can be written to the Cystic Fibrosis Foundation or to George Lazich. Contact: George Lazich, 20534 Annapolis Road, Dearborn Heights., MI 48125, 313-561-4176; [email protected]

Inner Strength, One Family’s Experience with Cystic Fibrosis (By Cloyce Jones). 181 pages; Perfect bound; catalogue #04-0971; ISBN 1-4120-3144-3; Publisher: Trafford Publishing; Written by Cystic-L member Cloyce Jones! The author says “One never knows what life will deal to them. Throughout our lives, my family and I have had to deal with uncertainty. Starting with the premature birth of our first born son. The uncertainty of whether he would be strong enough to survive. To be told only three months later that he had genetic inherited disease called Cystic Fibrosis as well as double pneumonia. Leaving us, his parents, with the question, “How much time do we have with our son?” It was through my son’s life that I found I had an inner strength within myself I never realized I’d had. This inner strength is what carried my family and I through after the birth of our daughter. To be told she did not have Cystic Fibrosis at birth to learn eighteen months later that she did. We thought we had control of the CF until CF began showing us it was in control. We fought CF with IV antibiotics, hospitalizations, home CPT treatments, oral and aerosol antibiotics, night tube feedings and home oxygen. When it looked like CF was going to win, we took the last option given to us to fight the CF, a double lung transplant.   In Stock/Readily Available.
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Destination Delinquency? (By A.J. Kloppers). Paperback: 152 pages ; Dimensions (in inches): 0.35 x 8.50 x 5.50 Publisher: PublishAmerica; (May 4, 2004) ISBN: 1413722199 Written by Cystic-L member Mandy Kloppers! The author says “I have written a book about living with Cystic Fibrosis and also detail my experience of developing a rare giant cell tumour at age 17 plus contracting a rare (there’s nothing ‘common’ about me!) blood disorder at age 25 which resulted in chemotherapy, I lost my hair, contracted pneumonia and was put onto a ventilator. Far from being self pitying though, I have tried to tell the story in a philosophical, matter of fact way. Hopefully others will be able to identify with many themes in the book as I focus on the power of positive thinking and having the right attitude. My mother (Jenny Hallam) also had CF and passed away 4 years ago (there is a picture of her in the Cystic-L memorial section).   In Stock/Readily Available.
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Bittersweet Chances: A Personal Journey of Living and Learning in the Face of Illness (By Dana Selenke Broehl). Paperback: 192 pages ; Dimensions (in inches): 0.52 x 8.54 x 5.58 Publisher: PublishAmerica; (April 12, 2004) ISBN: 1413713246 Written by Cystic-L member Dana Broehl! Chronic illness has the ability to rob life of its joy and meaning. The social, psychological, and emotional challenges of a chronic illness can destroy lives and leave empty human shells in its wake. But just as chronic illness is a thief, it is also a giver. It has the ability to transform lives by providing countless opportunities for knowledge, personal growth, and perspective. Chronic illness challenges us to accept its intrusively difficult nature and grow through the difficulty. Through a series of poignant essays and chronicled journal entries, Bittersweet Chances recounts Doug and Dana Broehl’s journey of growth through the darkness of cystic fibrosis and the renewed hope of a double lung transplant.   In Stock/Readily Available.
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From A Taste Of Salt (By Marcella M. Callicutt). Paperback: 136 pages, Publisher: PublishAmerica (April 1, 2004), ISBN: 141371482X    The author says “My book takes you through the good times and the sad ones as I dealt with the hereditary illness and death of my three daughters with Cystic Fibrosis.”   
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21st Century Complete Medical Guide to Cystic Fibrosis (CF), Authoritative Government Documents, Clinical References, and Practical Information for Patients and Physicians (CD-ROM) (By Marcella M. Callicutt). CD-ROM 30956 pages, Publisher: Progressive Management (April 1, 2004), ISBN: 1592487335    This up-to-date electronic book on CD-ROM provides the best collection available anywhere of official Federal government information and documents on the subject of cystic fibrosis. This CD-ROM uses next-generation search technology that allows complete indexing and makes all files on the disc fully searchable. For patients, practical information is provided in clearly written patient education documents. For medical professionals, doctor reference tools and texts have detailed technical information and clinical background material. This thoroughly researched collection presents vital information from many authoritative sources: National Institutes of Health (NIH), Centers for Disease Control (CDC), Food and Drug Administration, National Heart, Lung, and Blood Institute (NHLBI), and the National Institute of General Medical Sciences (NIGMS). Contents include clinical and medical information, with information on signs, symptoms, nutrition, testing, diagnosis, treatment, and more. In addition, as a bonus we have included an encyclopedic collection of general medical and health documents – thousands of pages with extensive material from the CDC and NIH on hundreds of diseases and health topics from A to Z, along with FDA drug and medical publications, government consumer healthcare tips, disease prevention programs, dietary guidelines, and travelers’ health information. Since navigating the Internet to find additional non-governmental medical information can be confusing, we’ve also provided our exclusive “Guide to Leading Medical Websites” with updated links to 73 of the best sites for medical information! By using weblinks on the CD-ROM, you can quickly check for the latest clinical updates directly from the government. This CD-ROM has over 30,000 pages reproduced using Adobe Acrobat PDF software and Reader software is included. Advanced search and indexing features are built into our reproduction, providing a complete full-text index. This enables the user to search all the files on the disk at one time for words or phrases using just one search command! The Acrobat cataloging technology adds enormous value and uncommon functionality to this impressive collection of government documents and material. There is no other reference that is as fast, convenient, comprehensive, and portable! Our CD-ROMs are privately-compiled collections of official public domain U.S. government files and documents – they are not produced by the federal government. They are designed to provide a convenient user-friendly reference work, utilizing the benefits of the Acrobat format to uniformly present thousands of pages that can be rapidly reviewed or printed without untold hours of tedious searching and downloading. This book-on-a-disc makes a superb reference work and educational tool for patients and their families, physicians, and other medical professionals. (Information on this CD-ROM is NOT a substitute for professional medical advice; of course, readers are urged to consult with a professional health care provider for any suspected illness.)   
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The Spider Who Never Gave Up (By Travis Flores). Paperback: 40 pages ; Dimensions (in inches): 0.10 x 8.50 x 8.50 Publisher: Authorhouse; (April 2004) ISBN: 1418403377 Reading level: Ages 4-8    The author (13 years old when the book was published in 2004) wrote this book when he was 8. Travis has cystic fibrosis and like other children with incurable diseases he had a chance to go to the Make A Wish Foundation and have his one wish come true. While many children wish for vacations in sunny places or to meet their favorite celebrity, Flores asked to have a children’s book published from a story he wrote and to give some of the proceeds to help find a cure for his disease. “When I was a little boy I saw people at the hospital who had already given up,” Flores said. “I wanted to show them you can’t give up. There isn’t a cure – yet.” Flores’ book is about a young spider named Sparkey who is having trouble spinning a web. Sparkey goes to his mother and asks why he can’t spin a web and she tells him to keep trying. Sparkey keeps trying and eventually spins a beautiful web. The book not only has an encouraging message, but some humor when Sparkey’s mother said she is fixing his favorite dish for dinner, which is stir-fly. The kids always get a laugh out of that part, Flores said. “The foundation has been wonderful to me,” Flores says. “I’m donating $1 back to Make A Wish and a percentage to cancer and cystic fibrosis (CF) research and for the research of Glutothione, a drug in experimentation to help patients with CF.” Flores is taking Glutothione and has spent less time in the hospital this year, said his mother Terry Flores. Flores thanked his family and especially his mother for her hard work in helping design a Web page and for “putting up with him.”   In Stock/Readily Available.
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Breath (By Donna Napoli). Hardcover: Atheneum; (November 1, 2003) ISBN: 0689861745 For Grade 8 Up – Legend has it that in 1284 the city of Hameln (or Hamelin) suffered a plague of rats of which they tried to rid themselves by hiring a piper to lead the vermin away. When the residents reneged on their payment to him, he led their children away, as well. This tale has proved fertile ground for a lot of literature, from the 19th-century poem by Robert Browning to a 20th-century novel by Gloria Skurzynski. Now Napoli adds Breath-and breadth-to the canon. She includes the potent elements of ergot poisoning and suspected witchcraft in her plot, which is narrated by 12-year-old Salz-a boy whose frequent, serious illnesses render him almost useless on his family’s farm. (An afterword explains that he has cystic fibrosis.) The author vividly describes the frightening conditions facing the townspeople and their increasingly desperate attempts to understand and overcome the torrential rains; the rat infestation; the diseases afflicting their livestock; and the physical, mental, and sexual maladies that beset them. Salz is an intelligent observer who is tried for witchcraft when he doesn’t succumb to the same illnesses as the rest of the population. (He doesn’t drink the beer made from the infected grain.) Readers unfamiliar with the psychotropic effects of ergot poisoning may be as mystified as these medieval citizens by the events presented here. Salz’s illness is likely to be equally puzzling until it is explained in the postscript. The confusion and speculation this ignorance might produce are realistically portrayed, but it’s possible that foreknowledge would provide a richer reading experience for teens.  In Stock/Readily Available.
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Cystic Fibrosis : A Guide for Patient and Family, 3rd Edition (by David M. Orenstein, Editor) A good, general, easy to read guide for the “lay person” which can be ordered from any bookstore. Good reference for those new to Cystic Fibrosis. Paperback: 462 pages Publisher: Lippincott Williams & Wilkins Publishers; 3rd edition (October 2003) ISBN: 0781741521   
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Breathing for a Living: A Memoir (By Laura Rothenberg). Hardcover: 272 pages Publisher: Hyperion; (July 2003) ISBN: 1401300596   “I’m a typical college student, if there is such a thing,” writes Rothenberg in this far from typical work. “Except that I won’t be able to look back on my life from an old age.” Rothenberg, who died in March, 2003 at the age of 22, originally wrote these calm, devastating lines in an essay as a freshman at Brown University. During her sophomore year, after Rothenberg became so ill from cystic fibrosis that she had to leave school, she decided to weave this essay into a much longer account. Starting early in 2001, as she waited in Boston for a double lung transplant, and continuing until her death, Rothenberg collected her personal diary entries, poems and copies of the e-mails she wrote to her many friends-dispatches from the battlefield of her own body. Shining through every report, every raw or bittersweet detail, is a fierce dedication to honesty and an immense desire to connect to friends and to life. “We have lungs,” one of her doctors calls to tell her early one morning. Rothenberg describes repeating the phrase into the phone to her still-sleeping parents; they were on their feet and packing by the time she repeated the joyous phrase to other friends, who repeated it like a mantra into mobile phones until the waiting room at Boston’s Children’s Hospital was overflowing with people who loved her-“Team Laura.” Too soon, however, the joy of the transplant and her return to Brown gives way to descriptions of one setback after another, culminating in rejection of the lungs. Refusing to indulge in even a wisp of false hope or consolation, Rothenberg reminds us that there is a power in us that is greater than even the greatest suffering. This slim book will help anyone whose life has been touched by cystic fibrosis, and countless others as well. It is an unforgettably real testament of the strength of one human spirit, and of our common human wish to know and say and be the truth.   In Stock/Readily Available.
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Yummy Yummy Nummy Nummy, Should I Put This In My Tummy? (By Kim MacGregor, Sharon Snider, Todd Reny). Paperback: 24 pages Publisher: Beautiful Beginnings Youth; (June 1, 2003) ISBN: 0973130121 Reading level: Baby-Preschool The author says of her daughter, Madison (a pwcf): She is the tiny heroine of a series of children’s picture books I have written and published to raise money for and help create awareness about CF. Having said that, the stories themselves do not touch on CF, as they are written for preschoolers, most of whom wouldn’t be able to relate to something they don’t understand. A portion of the proceeds from the sale of every book goes to CF research.  In Stock/Readily Available.
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Button, Buckle, Tie (By Kim MacGregor, Sharon Snider, Todd Reny). Hardcover: 24 pages ; Dimensions (in inches): 0.34 x 8.26 x 8.12 Publisher: Beautiful Beginnings Youth; (June 1, 2003) ISBN: 0973130148 Reading level: Baby-Preschool Preschool The author says of her daughter, Madison (a pwcf): She is the tiny heroine of a series of children’s picture books I have written and published to raise money for and help create awareness about CF. Having said that, the stories themselves do not touch on CF, as they are written for preschoolers, most of whom wouldn’t be able to relate to something they don’t understand. A portion of the proceeds from the sale of every book goes to CF research.   
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Cystic Fibrosis (By Melissa Abramovitz). Hardcover: 112 pages Publisher: Lucent Books; ISBN: 1590182995; (March 2003) Reading level: Ages 9-12 Explores the history, symptoms, diagnosis, and treatment of cystic fibrosis, reviews ongoing research, and discusses how to live with the incurable genetic disease that is often called “65 Roses.”   In Stock/Readily Available.
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Cystic Fibrosis: Everything You Need to Know (Your Personal Health) (By Wayne Kepron). Paperback: 160 pages Publisher: Firefly Books; (March 2003) ISBN: 1552977404. Cystic fibrosis afflicts approximately 30,000 Americans. The average age of survival has been steadily increasing, but not quickly enough: a child born with cystic fibrosis today can only expect to live 35 to 40 years. In this valuable new addition to the Your Personal Health series, Dr. Wayne Kepron offers a comprehensive look at the disease that afflicts so many young people. Topics include: – Symptoms of cystic fibrosis – Making a diagnosis – Complications of the disease – Treatments (including lung transplants) – Techniques and precautions in lung care – Transition into adulthood – Prospects for gene therapy – End-of-life issues Using diagrams, charts and case studies, Cystic Fibrosis is designed for patients, their families, and caregivers. It is both a quick reference guide and a tool for in-depth study.   

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The Changeling Plague (By Syne Mitchell). Paperback: 327 pages ; Dimensions (in inches): 0.89 x 6.94 x 4.38 Publisher: Roc; (February 4, 2003) ISBN: 0451459105 After Mahn’s disease ravages the population, viral engineering, which created it, is prohibited by the Beijing Treaty. Money still talks, though, and wealthy cystic fibrosis patient Geoffrey Allen obtains an untested viral treatment that seems to work perfectly. Then his associates fall ill and die of strange cancers and genetic diseases they shouldn’t have developed. Allen is quarantined at the Centers for Disease Control, where Lilith Watkins is pointed in the direction of a cure by Idaho, a man whose sister died of Mahn’s. The medical establishment succeeds, it thinks, in controlling the new malady but fails to understand its malevolent potential. Idaho, however, comes to an unorthodox understanding of the disease, and the upshot of this is a change in the face of human nature. Cloaked in fast-paced entertainment, Mitchell’s futurist medical thriller and cyberpunk meditation is at heart a very human story of the desire to become more than we are.  In Stock/Readily Available.
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Health Journals for Parents, Caregivers and Healthcare Professionals by Erin Hopf.Erin writes: “As the parent of a child with Cystic Fibrosis, I know how valuable the information I record is to both my daughter, and her Healthcare Team. Medical personnel need the information that only a parent, caregiver, or patient can provide to make the best possible medical decisions. These journals were created with both the user, and the healthcare provider in mind. I have created and copyrighted three journals, which are indispensable. They are detailed, yet user friendly, with layout which provides a way to keep track of the information which is absolutely necessary for doctors to have readily available to them. These journals will make doctor’s visits, trips to the ER, or even hospital stays less stressful for both the user and the Physician. The accurate information they help record, will empower the patient, caregiver, or parent with the secure knowledge that they can and will be able to provide answers to the healthcare providers most important questions. At the same time, the Physician’s visit will be more effective and more efficient.

The first journal, ” Juggling Cystic Fibrosis” is extremely detailed and provides the user with an easy to understand format, for recording valuable information regarding the special concerns of a person with Cystic Fibrosis. Using “Juggling Cystic Fibrosis Journal” to record my daughter’s health information has brought a great deal of relief. I have the answers to questions that doctors will ask, and knowing that gives me peace of mind. It enables me to record what I need to, place it on a shelf, and move on with our lives secure in the knowledge that it will be there when I need it.

“There’s No Place Like Home. A Hospital Journal” is extraordinarily valuable to those faced with any illness in which frequent hospital stays, or visits are necessary. Its design is not disease specific; instead, it has been created to be used for the recording of any chronic illness.
The third journal is called simply “A Health Journal”. The cover provides a place to write a child’s name signifying that this is their book. This is a journal to be used by any parent, or caregiver, for their child, or loved one. A health journal should be part of maintaining the health of any child. This book is an instrumental part of chronicling the medical history of a loved one in a way that best serves the user, as well as the physician. These journals can help you provide the best care possible for patients, by giving them the tool they need to accurately record information that you will need to know to give them that care. They will expedite visits, and clients will leave secure in the knowledge, that communication between client and Physician was clear, and informed. Each journal is 8.5 x 5.5 inches in size, and is spiral bound, to lay flat, and for ease of writing. I know you will find the benefits of providing these journals to your patients immeasurable. Thank you for your time.”

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Living With Cystic Fibrosis (Living Well Chronic Conditions) (By Susan H. Gray). Reading level: Ages 9-12; School & Library Binding;; Childs World; ISBN: 156766105X; (October 2002)  In Stock/Readily Available.
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Taking Flight: Inspirational Stories in Lung Transplanation (By Cystic-L member Joanne M. Schum, Compiler). Paperback Publisher: Trafford; ISBN: 1553696840; (August 2002)   TAKING FLIGHT – INSPIRATIONAL STORIES OF LUNG TRANSPLANTATION is all about goals, dreams, family and wishes that come true. When an individual hears the words, “lung transplant” for themselves, a loved one, or a friend, they are hurled into a multitude of emotions and panic. Lung recipients know this gut-wrenching feeling. They’ve lived the fears, the wonder and the surgery. But they also know the joy of life after transplant and that the adventures, goals and pursuits they’ve accomplished are part of the determination they’ve held onto. Their new given abilities, or their return to former careers, family and desires after transplant, provide inspiration to other pre and post lung and heart/lung recipients, family members, colleagues and to the doctors and surgeons they are now involved with. Joanne Schum, the compiler of this collection, says “What has been absent for those considering a lung transplant is a resource whereby they can read personal experiences of lung and heart/lung transplantation success. Reading living proof can make the process that much easier and understandable to those not in the medical field. I thirsted for such an option when I was waiting for my lungs. I again wondered why this very important written material did not exist when my sister was waiting for her lung transplant. The reason it did not exist? It is difficult to gather stories from all around the world (New Zealand, Australia, Israel, United States, etc.) for all various lung illnesses (Kartagener’s Syndrome, Cystic Fibrosis, Pulmonary Hypertension, Emphysema, Idiopathic Pulmonary Fibrosis, Silicosis, COPD, Bronchiectasis, Alpha-1 Antitrypsin Deficiency, Sarcoidosis, Lymphangioleiomyomatosis) from those who were now leading full, healthy lives. So I took it upon myself to contact this determined group of people and asked them to write their story, or if so desired, I would write their story for them. Write they did! All 255 lung recipients, heart/lung recipients, and caregivers were more than happy to share their “Flight Record” for others to learn, gain hope and inspiration from. TAKING FLIGHT is a first for all of us that are lung recipients. A much needed first that will help so many to “Take Flight” on a smoother, more comforting journey.”
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Cystic Fibrosis in the 20th Century People, Events, and Progress (Edited by Carl F. Doershuk, M.D.). Hardcover – 29 chapters by 29 contributors, 370 pages, 23 pictures, indexed by subject and name. This book chronicles the remarkable increase in survival and quality of life seen since the description of the disease in 1938. It includes the origins and subsequent impact of the US CF Foundation, the International CF [M] Association, and the International Association of CF Adults on the natural history of the disease. Described are the many individuals who served on and furthered the growth and effectiveness of these organizations. In-person memories dating from the 1940s are recounted by a spectrum of key participants in the Cystic Fibrosis story, including past presidents, early organizers of the several CF organizations, Center Directors, care providers and researchers, community volunteers, family members, and also patients.
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The 2002 Official Patient’s Sourcebook on Cystic Fibrosis (By Icon Health Publications, James N. Parker (Editor), Philip M. Parker (Editor)). 356 pages; Publisher: Icon grp int; ISBN: 0597831467; (June 2002)   In Stock/Readily Available.
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Lisa, the Brief Life of a Writer (by Lisa Malia McDonough). Paperback: 412 pages ; Dimensions (in inches): 1.04 x 8.58 x 5.54 Publisher: Xlibris Corporation; ISBN: 1401038956; (January 2002) In-Print Editions: Hardcover; may also be avalible through USACFA for $20 per hardcover book and $15 per softcover book (USACFA, PO Box 1618, Gresham, OR 97030-0519). The book contains many writings that were published in Lisa’s newsletter “Roundtable”, in the Palm Beach Post, in “CF Roundtable” and in other publications, as well as some that previously were unpublished. It is the kind of book that you can read as you have time. It is not a continuous story. Most articles are no more than one or two pages long. The book is 411 pages long. Although it is not specifically about CF, it does contain many insights into living with CF.  In Stock/Readily Available.
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Alive at 25 : How I’m Beating Cystic Fibrosis (by Andy Lipman). Hardcover – 256 pages (January 2002) Longstreet Press; ISBN: 1563526816      Written by Cystic-L’s own Andy Lipman! You know how effective a motivational leader Andy is — just wait until you read his first book! Sure to help pick you (or someone you love) up on those “down” days!   In Stock/Readily Available.
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Children of Courage: a narrative of trial and hope (by Charles W. Allen). Paperback, Publisher: Allyn House (2002), ISBN: 097191320X. Children of Courage is about a family of six children and their parents. Being born with terminal illnesses (Cystic Fibrosis), two of the children faced the certainty of early deaths, while the remaining four nurtured, watched, and adjusted as they bid their brother and sister a final goodbye. It took monumental courage by those facing death to go forward, and it took another type of courage, equally as demanding, for the others to adapt and continue on with their own lives. Children of Courage is a family narrative of trial, acceptance, adjustment, and hope as told through entries their father made in his journal with every measure of succored time lived by their mother.  
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Growing Older with CF: A Handbook for Adults (Solvay Pharmaceuticals Co.). This handbook is a valuable resource for adults with cystic fibrosis (CF). It provides information on the many medical and psychological issues that are of special concern to adults. The handbook is divided into the following sections: * Cystic Fibrosis: The Basic Facts * Everyday Problems/Everyday Care (information on lung care, gastrointestinal and nutritional issues, and reproductive health) * Medical Complications (information on lung complications, lung transplantation, gastrointestinal complications, diabetes mellitus, cancer, arthritis, and other joint and bone conditions) * Medical Care for Adults (information on finding and making the transition to appropriate adult CF care) * Living With Cystic Fibrosis: The Adult Experience * When CF Is Diagnosed in an Adult: Special Concerns * In the Future (a review of ongoing medical research)
Free to US Residents only by becoming a member of mycysticfibrosis.com (more information here: http://www.mycysticfibrosis.com/growing_older.asp). The book is also avalible free from the Cystic Fibrosis Trust (email: [email protected]) in the United Kingdom by filling out and mailing the form at this link: http://www.cftrust.org.uk/scope/documentlibrary/Publications/5000Publicationslist.pdf

Transpersonal Perspectives on Spirituality in Social Work (Edited by Edward R. Canda and Elizabeth D. Smith). Hardcover: 182 pages, Publisher: Haworth Press (October 1, 2001), Language: English, ISBN: 0789013940   Cystic-L member Melissa Morgan says “…here are some interesting bits of info about this book. The first is that Edward Canda, has CF, as his brother, Tom, did who succumbed to the disease at age 41. The second fact is that there is a chapter which mentions Cystic-L, dedicated specifically to CF patients’ feelings about living with the disease. Two CF doctors, Dr. Robert Stern and Dr. Carl Doershuk who work at Univ. Hospitals in Cleveland, helped to contribute to the research on this chapter on cf. So if anyone is interested, it’s a good book.”  In Stock/Readily Available.
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A Whisper of Rosemary (by Colleen Gleason). Paperback (July 2001) Avid Press, LLC; ISBN: 1929613962   (Historical Novel) Knights in shining armor…damsels in distress…adventure, romance, intrigue…. Dirick of Derkland, man of the king, sets off on a mission of revenge after his father’s brutal murder. His mind is bent solely on vengeance until he meets the beautiful Maris of Langumont…. Maris of Langumont has vowed never to wed…but her father must do his duty to protect her, and he promises her to Victor D’Arcy—a man who makes her blood run cold. Bon de Savrille rests his eyes upon Maris only once, and decides she must be his. He whisks her away just before her betrothal ceremony, determined to force her into marriage. When Dirick appears at the castle where Maris is held captive, she believes he is part of the plot…and ’tis nearly his death she causes during her chance to escape.
The author is a mother of three, one of whom has CF. She says “All of the author proceeds from my books will be donated to the Cystic Fibrosis Foundation.” This full-length book is available either as a paperback (autographed copies available), on via email in a variety of formats (PDF, RTF, etc.) For free shipping call toll-free: 1-888-284-3257 or click the link below.   In Stock/Readily Available.
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Cystic Fibrosis (Perspectives on Disease and Illness) (by Judy Monroe). Reading level: Ages 9-12; School & Library Binding; 64 pages (August 2001) Lifematters; ISBN: 0736810269      In Stock/Readily Available.
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For Love Of Life (by Laura J. Scott Ferris). Paperback – 246 pages (May 2001) FLOL Publishing; ISBN: 0970932502    During the first 25 years of life, Laura J. Scott Ferris struggled for breath. The simple joy of breathing eluded her. She was born with Cystic Fibrosis and the doctors did not expect her to live beyond the age of five. Through the power of prayer, faith, determination and medical break throughs her life expectancy was extended. At the age of 25 the doctors told Laura news that would test not only her faith in God, but her will to survive: undergo a double-lung transplant or die. For Love of Life is the true story of a courageous young woman, and the man who dared to fall inlove with her. Laura’s courage will inspire anyone with a a terminal illness to embrace life anddiscover their own strength and courage to live despite their illness. Laura lives with her husband Kent in the foothills of the Rocky Mountains. She continues to dopublic speaking on her life’s journey with a terminal illness and on organ donation to high schools,churches and organizations.   In Stock/Readily Available.
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Everything You Need to Know About Cystic Fibrosis (Need to Know Library) (by Justin Lee). Library Binding (October 2001) Rosen Publishing Group; ISBN: 0823933210     In Stock/Readily Available.
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Self-Care Now! 30 Tips to Help You Take Care of Yourself & Minimize Caregiver Burnout (by Pauline Salvucci). Paperback: 20 pages Publisher: Pauline Salvucci; ISBN: 0970593910; (July 30, 2001)   In Stock/Readily Available.
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Self-Care Now! 30 Ways to Overcome Obstacles That Prevent You From Taking Care of Yourself (by Pauline Salvucci). Paperback: 20 pages Publisher: Pauline Salvucci; ISBN: 0970593902; (July 30, 2001)   In Stock/Readily Available.
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Self-Care Now! 30 Tips to Help You Take Care of Yourself When Chronic Illness Turns Your Life Upside Down (by Pauline Salvucci). Paperback: 20 pages Publisher: Pauline Salvucci; ISBN: 0970593929; (July 30, 2001)   In Stock/Readily Available.
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The Lung Transplantation Handbook (by Karen A. Couture) Spiral-bound: 270 pages Publisher: Trafford; ISBN: 1552125041; (February 22, 2001)   Written by an individual who has been there and in addition to factual information, provides helpful hints for lung and heart/lung transplant patients and their families. The author is a double lung transplant recipient who provides authoritative research on the subject as well as providing her personal experiences with the transplant process. This book, orginally published by the Second Wind Lung Transplant Association under the title “Things You Should Know About Lung Transplantation: Before, During and After”, has now been updated and expanded in this, the second edition. This book is a must-read for lung transplant candidates, recipients and family members, as well as transplant professionals.  In Stock/Readily Available.
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The Pain Journal (by Bob Flanagan). Paperback – 205 pages (November 1, 2000) Semiotext(e); ISBN: 1584350024; Dimensions (in inches): 0.46 x 6.98 x 4.51; Los Angeles writer and artist Bob Flanagan created performances with Sheree Rose that shocked and inspired audiences. He combined text, video, and live performance to create a highly personal but universal exploration of childhood, sex, illness, and mortality. The Pain Journal, Flanagan’s last finished work, is an extraordinary chronicle of the final year of his life before his death from cystic fibrosis at the age of forty-three. (Also by the same author: the videotape “Sick” in the CF Shop, and book Bob Flanagan : Supermasochist)   In Stock/Readily Available.
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The Arrival (Gene Roddenberry’s Earth–Final Conflict) (by Fred Saberhagen). Paperback: 315 pages, Publisher: Tor Books; 1 Mass Mkt edition (October 1, 2000) ISBN: 0812568885; The first book tie-in to TV’s Gene Roddenberry’s Earth: Final Conflict deals with the arrival of the Taelons, the series’ humanoid aliens. They present themselves as earthlings’ beneficent companions, which appeals to billionaire Jonathan Door because the Taelons claim to be able to save his wife, who is dying of cystic fibrosis. Jonathan’s father, Jubal, reveals the truth, however, by telling the gripping story of his own abduction by the Taelons from William Randolph Hearst’s San Simeon estate in 1936.   In Stock/Readily Available.
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Genetic Disorders Sourcebook : Basic Consumer Health Information About Hereditary Diseases and Disorders, Including Cystic Fibrosis, Down Syndrome,… (by Kathy Massimini (Editor)). Hardcover 2nd edition (October 2000) Omnigraphics, Inc.; ISBN: 0780802411   Defective genes are responsible for an estimated 4,000 hereditary disorders. Children inherit these disorders from their parents in many different ways. While biomedical researchers have now identified most genes associated with genetic diseases, there are no absolute cures for these diseases today. Scientific advances have enabled affected people to experience longer and more comfortable lives, because they and their families have more beneficial means of coping with genetic disorders.
This second edition Sourcebook provides new and updated information to help laypeople understand the working of genes, the ethics of gene testing, and the causes and treatments of some of the most common genetic disorders. The book also covers the lifestyle expectations of individuals who suffer with these disorders, their disease management and care, and current research initiatives to prevent and cure gene defects. A glossary of genetic terminology and a directory of resources provide additional support and information.   In Stock/Readily Available.
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Taking Cystic Fibrosis to School (by Cynthia S. Henry, Tom Dineen (Illustrator)). Paperback – 32 pages (September 2000) JayJo Books; ISBN: 1891383094   Even though Jessie has cystic fibrosis, she can still attend school and do many of the same things as her classmates. Written from Jessie’s perspective, this book explains and educates her classmates about her condition. Jessie explains to her classmates what cystic fibrosis is and tells them that it feels like “elephants dancing on her chest.” She has to cough a lot, but she explains how it actually helps her. Jessie shows the class how her parents help her to keep her lungs clear. Designed to help kids better understand their classmates with cystic fibrosis, this brightly illustrated picture book also educates families, teachers, school nurses, parents, and caregivers. A quiz for kids and tips for teachers are included.   
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Blow the House Down: The Story Of My Double Lung Transplant (by Charlie Tolchin). Size: 6 x 9, 264 pages, iUniverse.com; ISBN: 0595005586    What is it like to receive a life-saving organ transplant? On April 13, 1997, I received new lungs. Blow the House Down details my story. It illustrates how Cystic Fibrosis affected my life and how I fought it. This book reflects the immense generosity of so many people, including my donor and her family; my family and friends; people who donate to Cystic Fibrosis research and drive major scientific breakthroughs; and doctors, nurses, and physical therapists who toil hard day in and day out to restore our health. Together, we each have the power to cure disease.   In Stock/Readily Available.
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Cystic Fibrosis (Health Watch) (by Susan Dudley Gold). Enslow Publishers, Inc.; ISBN: 0766016552 October 2000,  Reading level: Ages 9-12  In Stock/Readily Available.
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The Spirit of Lo (by Terry and Don Detrich) A first-person account by the parents of a girl with Cystic Fibrosis. Donna Scribani, a Cystic-L subscriber, says “It is the ‘Frank DeFord story of the new millenium.’ The Dietrich family is a beautiful one and you will enjoy getting to know them in their story. Theirs is a life in progress (no sad ending here). You will see yourself, your child(ren), your spouse, your loved ones throughout this book as you read about a normal family living their life, coping with their daughter’s CF.”  In Stock/Readily Available.
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Bob Flanagan : Supermasochist (People Series) (by Andrea Juno (Editor), V. Vale (Editor), Bob Flanagan, Sheree Rose). Paperback – 126 pages Vol 1 (August 31, 2000) Juno Books; ISBN: 1890451096; Dimensions (in inches): 0.39 x 11.04 x 8.40; Bob Flanagan (1952-1997) grew up with Cystic Fibrosis (a genetically inherited, nearly-always fatal disease). The physical pain of his childhood was alleviated by masturbation and sexual experimentation, resulting in his life-long practice of extreme masochism. In Bob Flanagan: Supermasochist, Flanagan reveals, in deeply confessional interviews, his life story and sexual practices, and his extraordinary relationship with his long-term partner and mistress, photographer Sheree Rose. He tells how frequent near-death encounters modified his concepts of gratification and abstinence, reward and punishment, and intensified his masochistic drive. Through his insider’s perspective on the various S/M communities, we learn firsthand about branding, piercing, whipping, bondage, and endurance trials. Surprisingly, the most extreme narratives are infused with humor, honesty, and self-reflective irony. Bob’s sharp intelligence and lack of pretense belie a deep commitment to deciphering philosophical issues regarding body, power, sex, life, and death. (Also by the same author: the videotape “Sick” in the CF Shop, and book The Pain Journal)   In Stock/Readily Available.
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My Heart is Full of Wishes (by Joshua Grishaw, Lane Yerkes (Illustrator)) A first-person account by a person with Cystic Fibrosis. Reading level: Ages 4-8; Raintree/Steck-Vaughn Publish-A-Book; February 2000,  
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Stevie’s Secret (by Diane Shader Smith) Mass Market Paperback: 160 pages Publisher: Diane Shader Smith; ISBN: 0970035314; (September 1999)When Stevie Jaeger begins her freshman year of high school, she has two goals: to dance in Company, and to with the attention of Kyle, the cutest guy around. But Terra, a popular senior, proves an obstacle on both fronts. Stevie endures Terra’s contempt with humor and determination, of which she has plenty — along with a secret no one must know … not if she is ever going to fit in with Company (she has CF). Realizing that dance technique is only a small part of the challenge, Stevie risks heart and soul to be a part of what she loves. Along the way, she learns that friendship can be the greatest test of courage, and the most rewarding of feats. Diane Shader Smith depicts the struggles of growing up with sensitivity and insight. In Stevie, she creates a spirited character, a girl who must learn to trust others if she is to grow not just older, but stronger. From the author of Mallory’s 65 Roses comes a novel written without sentimentality, but with honesty and verve. Stevie’s Secret will linger in your heart long after the final curtain. May also be had for free upon request from http://www.axcanscandipharm.com/contact   In Stock/Readily Available.
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Herbal Antibiotics : Natural Alternatives for Treating Drug-Resistant Bacteria (Storey Medicinal Herb Guide) (by Stephen Harrod Buhner) Paperback – 128 pages (September 1999) Storey Books; ISBN: 1580171486. In response to mounting evidence of an increase in antibiotic-resistant strains of bacteria, scientists around the world are studying the effectiveness of using herbs such as garlic, echinacea, grapefruit seeds extract, licorice, onion, red clover, St. John’s wort, and others. In easily accessible language, Herbal Antibiotics presents all the current information about the major antibiotic resistant microbes and the herbs that are most effective in fighting them.   In Stock/Readily Available.
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Between Husbands and Friends (by Nancy Thayer) Hardcover – 241 pages (August 25, 1999) St Martins Press (Trade); ISBN: 0312206135. There is a CF thread throughout this fictional family drama.  Hardcover and Paperback In Stock/Readily Available.
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Miguel & Sarah: Close Friends and Cystic Fibrosis Authored by Cystic-L subscriber Andrea Dowell (an adult with CF) and Kathi Rokke. Paperback, Large Print: 22 pages Publisher: Children’s Hospitals & Clinics; ISBN: 0964497212; (March 1999) A picture book for ages 5 to 9 in which Miguel explains what he has learned from his friend, Sarah, who has CF. A well researched book that speaks to children on their level. The book is intended to help children with CF in understanding and coping with their disease and in explaining their disease to family and friends. It provides teachers with a resource for use in classroom instruction and helps children gain a knowledge of CF to broaden their understanding of those with chronic illnesses.  In Stock/Readily Available.   Order from: Malkerson Library, Children’s Hospitals and Clinics, 2525 Chicago Ave. S., Minneapolis, MN 55404-4597 $8.00 per copy (MN residents add .56 tax per copy) includes postage and handling.
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Beyond Chaos : One Man’s Journey Alongside His Chronically Ill Wife (by Gregg Piburn), Paperback – 320 pages (May 1999) Arthritis Foundation; ISBN: 091242320X. This daring and thought-provoking chronicle encourages readers, both the healthy and the unhealthy, to become open, honest, and courageous in dealing with the sensitive issues surrounding a life invaded by chronic illness. Donna Scribani, a Cystic-L subscriber, says “I am reading a book right now that is the absolute best book I have come across with regards to living with chronic illness (I am a caregiver, not a patient). The book is useful reading for both patient and caregiver, etc. I actually heard about the book on Cystic-L I believe. The title is: Beyond Chaos: One Man’s Journey Alongside His Chronically Ill Wife, written by Gregg Piburn. Although it doesn’t follow a CF person’s illness, there isn’t much that doesn’t run parallel to the emotions, physical setbacks, etc. that I have experienced with managing my child’s CF. Excellant book. I just bought my own copy despite having borrowed one from our local library.”  In Stock/Readily Available.
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The Nicholas Effect: A Boy’s Gift to the World (by Reg Green), Hardcover – 246 pages (May 18, 1999) O’Reilly & Associates; ISBN: 1565925971. The Nicholas Effect is the touching and transcendent book by Reg Green, father of Nicholas Green, the little boy from Bodega Bay, CA, who was shot in Italy and whose organs were donated to seven Italians. This led to an outpouring of love by the people of Italy and a sharp increase in organ donor rates. Here is a book that will make you cry, make you glad you’re a human, and make you want to do something great.   In Stock/Readily Available.
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Your Child in the Hospital: A Practical Guide for Parents (by Nancy Keene, Rachel Prentice, Linda Lamb (Editor)), Paperback – 160 pages 2nd edition (April 15, 1999) O’Reilly & Associates; ISBN: 1565925734. Pocket-sized, practical guide for parents. Discusses preparing a child for staying in the hospital, packing for the hospital, preparing for surgery, pain management, feelings and behavior, keeping family life going, hospital records, payments, and financial assistance. Previous edition: c1997. Trim size: 8 x 5 inches. Softcover.   In Stock/Readily Available.
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Good If Not Great Living With Lung Disease (Last of six) (by Phil Petersen, B., Sheree Watson (Editor), Paperback (March 30, 1999) Raven Publishers Inc.
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The Omega Diet: The Lifesaving Nutritional Program Based on the Diet of the Island of Crete (by Artemis P. Simopoulos, Jo Robinson) Paperback – 382 pages 1 Harper edition (March 1999) HarperCollins (paper); ISBN: 0060930233. Is it really possible that eating more fat is the key to better health? It depends on the fat, according to Dr. Artemis Simopoulos. The Omega Plan shows, in great detail, the difference between omega-3 fats, those found in fish and some green vegetables, and omega-6 fats, which are found in most meats and vegetable oils. The former have heart-protective and cancer-preventive properties; the latter, she writes, cause obesity, heart disease, cancer, depression, and a host of other ills. Omega-3 fats are at the heart of her plan, along with ample servings of fruits and vegetables. Unlike diets based on deprivation, Simopoulos offers some fairly lush food choices, including an ounce of cheese every day. Best of all, The Omega Plan is bursting with so much useful information about food shopping and preparation that you’ll be able to use its advice the second you put the book down.   In Stock/Readily Available.
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The Ethics of Organ Transplants : The Current Debate (by Arthur L. Caplan (Editor), Daniel H. Coelho (Editor)), Paperback – 320 pages (March 1999) Prometheus Books; ISBN: 1573922242 In 34 mostly recent articles, bioethicists, medical, legal, and cultural analysts confront the difficult issues engulfing organ sources, policies, commodification, and values: defining death, the use of fetal tissue, living donors, xenografting, selling and allocating organs. The bibliography includes web sites.  In Stock/Readily Available.
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Cystic Fibrosis: A Family Affair (by Jane Chumbley) Paperback – 128 pages 1 edition (March 1999) SPCK and Triangle; ISBN: 0859697711; This book is divided into three sections; the first is a guide for parents, with a section answering the bewildering questions that are often asked. The second section covers life for young adults who have CF and the practical and emotional difficulties faced by their families. The third section covers the prospects of new treatments for CF and the progress of research into gene therapy. The book offers real hope in the face of life threatening illness.   In Stock/Readily Available.
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Good If Not Great Travel With Oxygen (by Phil Petersen)
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The Breathing Disorders Sourcebook (by Francis V. Adams, MD) Paperback – 240 pages (November 1998) Lowell House; ISBN: 073730006X; This book describes normal breathing and specific lung diseases (including sleep apnea, asthma, COPD, lung cancer, sarcoidosis, cystic fibrosis, fibrosis, kyphoscoliosis) with the goal of increasing patient understanding. The most disturbing symptom of lung disease, air hunger or shortness of breath is discussed as well as the proper medical evaluation that is called for. Suggestions for the proper diet, lifestyle changes, and specific breathing exercises are given for individuals with lung disease.   In Stock/Readily Available.
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Coping With Prednisone : (*and Other Cortisone-Related Medicines) : It May Work Miracles, but How Do You Handle the Side Effects? (by Eugenia Zukerman (Introduction), Julie R. Ingelfinger), Paperback – 208 pages 1 stmartin edition (October 1998) Griffin Trade Paperback; ISBN: 0312195702; When the world-renowned flutist Eugenia Zukerman was put on prednisone to combat a rare lung disease, she teamed up with her sister, a prominent physician, to write a comprehensive, practical guide to making treatment with prednisone as effective and trouble-free as possible.   Hardcover and Paperback In Stock/Readily Available.
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Naked Before God : The Return of a Broken Disciple (by Bill Williams, Martha Williams), Hardcover – 352 pages (July 1998) Morehouse Publishing Company; ISBN: 0819217395; The question “why?” has haunted Bill Williams ever since his two siblings died of cystic fibrosis. As he himself grapples with the disease, he records his struggle to answer that question. Written from the perspective of Nathaniel, an imaginary disciple of Jesus, this cystic fibrosis patient wanders through the Gospel narratives revisiting a theology of suffering from his own unique perspective. Arguing with Jesus and the other disciples, Nathaniel seeks healing for his soul even as his body falls apart. In painfully honest language, he demands to understand grace, suffering, and forgiveness and seeks to know the reality of God’s love for him. This is no theoretical theology, but a new lived theology that arises from experience and struggle, rather than from a textbook. Fearless in his search for answers, Williams takes on questions of life and death and faith, while maintaining am extraordinary sense of humor. His poetic prose, the sharpness of his wit, and the profound nature of his struggle will capture any reader who has struggled with questions of evil, pain and suffering. Bill Williams had been a semi-professional musician, an electronics technician, and a computer and video game designer. He gave all that up to pursue a Master of Arts Degree from The Lutheran School of Theology at Chicago, where he received an Outstanding Biblical Studies Award in 1994. LSTC also honored Williams with the Confessor of Christ Award. He is also the author of Manna in the Wilderness: A Harvest of Hope. Bill Williams died of cystic fibrosis in May 1998.   Hardcover and Paperback In Stock/Readily Available.
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Understanding Cystic Fibrosis (Understanding Health and Sickness Series), (by Karen Hopkin) This layperson’s resource gathers the latest advances in medical treatment, new and better tests for early diagnosis, and the many new research discoveries made after scientists pinpointed the gene causing CF in 1989. Especially helpful in this volume are guides for how best to work with HMOs and a list of support groups, organizations, and resources for families. In clear terms, Karen Hopkin, a Ph.D. in biochemistry from Albert Einstein College of Medicine, reviews all currently available treatments, discusses the history and diagnosis of CF, and covers the effects of the disease on the body. She also explains who gets CF and why, and illuminates new research that may one day lead to a cure. June 1998   Paperback In Stock/Readily Available.
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Alex, the Life of a Child. (by Frank Deford) A personal account of the life of Alexandra Deford who died of CF. It was written by her sportswriter father. He has also volunteered much time and effort to the Cystic Fibrosis Foundation in the many years since Alex died. Paperback – 224 pages (September 1997) Rutledge Hill Press.
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Mallory’s 65 Roses (by Diane Shader Smith) Mass Market Paperback: 24 pages Publisher: Diane Shader Smith; ISBN: 0970035306; (August 1997) Mallory’s 65 Roses is the engaging story of Mallory, a creative and energetic little girl afflicted with cystic fibrosis (CF), an inherited lung disease. She explains her condition and its ramifications in her own words, painting a picture accessible to children and poignant to adults. “My mom says that doctors are working hard to find a cure for CF, a way to make kids with CF all better. She says that they are close to finding a cure right now. When they do, CF will stand for ‘cure found.’ I can’t wait for that day.”    May also be had for free upon request from http://www.axcanscandipharm.com/contact   In Stock/Readily Available.
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Coping With Prednisone (And Other Cortisone-Related Medicines): It May Work Miracles, But How Do You Handle the Side Effects, Eugenia Zuckerman and Julie Ingelfinger, MD, St. Martin’s Press, New York, Hardcover, 176 pages; ISBN: 0312155026
A member of Cystic-L said “Written from both a physician and layman’s perspective, it is really interesting reading, if a little scary when reading about all the side effects!” Other opinions/reviews are given at the link below. August, 1997  In Stock/Readily Available.
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Spirited Threads : A Fabric Artist’s Passion for Life : The Art and Writings of Patricia Cline, Paperback: 270 pages, Publisher: Sibyl Publications (July 1, 1997), ISBN: 0963832786. The journal of a quilt artist edited posthumously by her friend and teacher Tucker, Spirited Threads is a study of the artist’s passion for quilting that widened her world far beyond the hospital bed that became her quilting studio. Cline was born with cystic fibrosis, a debilitating disease that doctors predicted would end her life before adulthood. Always the rebel, Cline never gave in to the disease, fighting to attend college and then to become a quilt artist, a feminist, and a voice for the physically challenged. In reading Cline’s journal, we see the power a “healthy obsession” can give one to transcend even the worst that life hands out.   
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Fatal Cure, Robin Cook, Paperback: 464 pages; Publisher: Berkley Publishing Group; Reissue edition (July 1, 1997) ISBN: 0425145638; If Cook’s skills as a writer were as finely tuned as his sense of timing, his 14th medical thriller (after Terminal ) would be a lot more rewarding. Current political events guarantee that a suspense novel centering on health care management will be topical and at least potentially fascinating. Unfortunately, stock characters, stilted dialogue and improbable heroes and villains make for difficult reading here. Idealistic young doctors David and Angela Wilson take positions at a state-of-the-art medical center in a small Vermont town partly because they see it as an ideal spot for their daughter, who suffers from cystic fibrosis. But the town is not as idyllic as it seems, and the hospital is in a desperate financial bind due primarily to its contract with a local HMO, David’s new employer. Worse still, patients are dying unexpectedly almost daily, and no one seems to care very much. The deaths are not normal, of course, and astute readers will quickly determine who is behind them, why and–most likely–how. Cook raises troubling questions about the conflicts between medical and financial priorities in managed care (albeit in a somewhat distorted fashion), but it’s difficult to get emotionally involved in a scenario as improbable as this one. Literary Guild and Doubleday Book Club main selection; Mystery Guild alternate; Reader’s Digest Condensed Book.   
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Till Death Do Us Part, Lurlene McDaniel, Bantam Books; ISBN: 0553570854, paperback, July 1997; The doctor’s diagnosis for April Lancaster is not good. April has a brain tumor which cannot be operated on. She’s only 18, and her future is uncertain. But when she meets Mark Gianni, a 21-year-old with a passion for car racing, things change. Mark is handsome and charming–and has cystic fibrosis. Despite herself, April falls completely in love with him. April says yes when Mark asks her to marry him. But a racing accident aggravates Mark’s CF, and April must make a decision that will change the course of her life forever.   Paperback In Stock/Readily Available.
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A Cheerleader for Life, by Marilyn Phillips, Paperback, Publisher: Rejoice Publishing (1997), ISBN: 0965666018. The true story of a brave girl with cystic fibrosis, her family and their triumph over the effects of this devasting disease through the power of faith, hope and love.   
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Close to the Bone : Life-Threatening Illness and the Search for Meaning by Jean Shinoda Bolen. A Cystic-L subscriber says: I’m in the middle of the book right now and for the first time in over a decade of being primary caregiver to a cf child, I feel empowered. I think when my child is an adult and I request him to read or listen to this audio tape, I will be passing along a gift to him. Another Description: Jungian analyst Bolen offers a thought-provoking and optimistic book about the roles patient, friend, and physician may play during life-threatening illnesses. Bolen argues that standard psychotherapy for such patients can be harmful because it concentrates on what is wrong with the patient; depth psychology, on the other hand, focuses on what is right with the patient. Indeed, Bolen maintains that life-threatening illness can provide opportunities, such as a chance to ask “who you are when you stop doing” and “do you matter?”. Bolen concludes that the importance of the soul has been neglected. Patients, family members, and caregivers should concentrate on freeing the soul and supporting the individual in whom it resides.   In Stock/Readily Available.
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Sibling Loss (by Joanna H. Fanos) A study of the long term psychological impact of loosing a sibling to cystic fibrosis. Many intriguing anecdotes and quotes and excellent analysis from a freudian point of view dealing with the associated guilt feelings and life choices made by those affected by this experience. 182 pages, (December 1996), Lawrence Erlbaum Assoc; ISBN: 0805817778   In Stock/Readily Available.
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In the Shadow of Illness; Parents and Siblings of the Chronically Ill Child (by Bluebond-Langner, M.), Princeton University Press, December, 1996, ISBN:0-691-02783-8
Bluebond-Langner is Professor of Anthropology at Rutgers University, Camden. She received the Margaret Mead Award for The Private Worlds of Dying Children and has lectured for twenty-five years in the U.S. and abroad about chronically and terminally ill children and their families. “This book powerfully illuminates the everyday experience of families living with a chronically ill child.”–Patricia A. Marshall, Associate Director of Medical Humanities Program at Loyola University Chicago, Strich School of Medicine
What is it like to live with a child who has a chronic, life-threatening disease? What impact does the illness have on well siblings in the family? Bluebond-Langner suggests that understanding the impact of the illness lies not in identifying deficiencies in the lives of those affected, but in appreciating how family members carry on with their lives in the face of the disease’s intrusion. The Private Worlds of Dying Children, Bluebond-Langner’s previous book, now considered a classic in the field, explored the world of terminally ill children. In her new book, she turns her attention to the lives of those who live in the shadow of chronic illness: the parents and well siblings of children who have cystic fibrosis. Through a series of narrative portraits, she draws us into the daily lives of nine families of children at different points in the natural history of the illness–from diagnosis through the terminal phase. In these portraits, as family members talk about their experiences in their own words, we see how parents, well siblings, and the ill children themselves struggle, in different ways, to contain the intrusion of the disease into their lives.
Bluebond-Langner looks at how parents adjust their priorities and their idea of what constitutes a normal life, how they try to balance the needs of other family members while caring for the ill child, and how they see the future. This context helps us understand how well siblings view the illness and how they relate to their ill sibling and parents. Since the issues raised are not unique to cystic fibrosis but are common to other chronic and life-threatening illnesses, this book will be of interest to all who study, care for, or live with the seriously ill.  Paperback and Hardcover In Stock/Readily Available.
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Hydrogen Peroxide : Medical Miracle. (by William Campbell Douglass, MD) Paperback – 184 pages (January 1996) Soundview Books; ISBN: 1885236077.  Jennifer Devine, a Cystic-L subscriber says “It will answer all your questions on my treatments, and why they work. And, how sucessful they are for people with lung disease.”   In Stock/Readily Available.
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Not to Worry, Mom, I’m Okay : Lessons in Living from a Beloved Son. (by Karma Smith Belnap) Paperback (June 1996)Covenant Communications; ISBN: 1555039316 Lisa Bergen, a Cystic-L subscriber says “It’s a mother’s story of her son with CF and their family. It is a really good book. A definate good read!!!”
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Corpi Meets the C.F. Kid. (by William G. Shank), 36 pages, 2nd edition (1996), ASIN: B00073C2NS. Written with children in mind. May be ordered free of charge from the author by emailing [email protected] with your mailing address, and putting “Corpi Meets the CF Kid” in the subject heading of your e-mail.   
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Paula Is My Name. (by David C. Howard) Paperback, Publisher: Lavender Publishing Co., Minette, Alabama (1996), ISBN: 093825202X. Review by Kathleen Flynn in the Spring 1998 CFRI News: Paula Black was diagnosed with cystic fibrosis when she was two years old. She died in May of 1990 at the age of 43. David C. Howard, a longtime friend of Paula’s, does an amazing job of pulling together the threads of her life and her writings and compiling a book of which Paula herself would have been proud. This book is a These chapters are then interspersed between essay chapters that Paula wrote for CF periodicals and local newspapers. The result is a woven tapestry of Paula’s life, her musings, her loves, and her struggle to live with CF. Paula’s thoughts on CF are poetic, at times competitive (she calls CF “her worthiest opponent”), and at times accepting of her limitations. Interestingly, because of her natural inclination toward athleticism and activity of any sort, Paula remained healthy for a good portion of her adult life. Her participation in beloved events, activities and crafts furthered her dedication to living life fully even after she became quite ill and was burdened with long hours of health care. One cannot help but love Paula-her spirit for living, her humanness, and her love of the sea, cats and children. I wept at the end of the book when she died, of course, but in truth the overall sensation I was left with was joy. I felt awe that someone could enjoy life so much in the face of the odds CF handed her. In fact, I believe most readers will find themselves inspired by her commitment to life, her antics with doctors, medications, and treatments, and her daily ability to relegate only a small portion of her life to CF. All the rest was about fighting back and enjoying life! Paula is My Name may be ordered by writing to the author: David C. Howard 2824 W. Beach Boulevard Gulf Shores, Alabama 36542   
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Cystic Fibrosis: The Facts. (by Ann Harris and Maurice Super) Part of the Oxford Medical Publication series. Paperback – 129 pages 3nd edition (January 15, 1995) Oxford Univ Press; ISBN: 0192625438. An interesting book, giving a British point of view on CF care and treatment. This edition contains a substantially updated approach to living with CF, and to the treatment of the disease.. It also includes new chapters on genetics and on new treatments.   In Stock/Readily Available.
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When Your Child Has A Chronic Illness; What you must know, what you can do, what you should expect (by Suzanne LeVert) Dell Publishing a division of Bantam Doubleday Dell Publishing Group, Inc. 1540 Broadway, New York, NY 10036. Copyright 1995. This book is not about CF but about dealing with a chronic illness. Really great, straight forward, down to earth kind of advice. This is a great book for new parents and for parents who maybe have not gotten or need a reminder course in getting it all together in dealing with a chronic illness (we all could use that from time to time). I got this at Book Stop bookstore for $3.99. If the book can not be found in your local bookstore it can be ordered directly from Dell books at Dell Readers Service, Box DR, 1540 Broadway, New York, NY 10036.

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Daybreak by Belva Plain; Mass Market Paperback, Reprint edition (April 1995) Dell Pub Co; ISBN: 0440216818
A member of CYSTIC-L says: This book is real big on plot- and has more twists than the average made for TV movie. Of course, CF is mixed into the plot along with a switched at birth scenario, racists and the KKK. Call it a good book for the beach, on a topic we care about. * Dana Jarrett, another member of CYSTIC-L, says: “Its treatment of cystic fibrosis is brief, more of a reference than anything else. Not recommended if you’re looking for education about the disease or its effects. A good beach read, with some suspense and plot twists.” * Another member of CYSTIC-L, says: “Daybreak was probably about the worst book dealing with CF I have read. It is light reading, had inaccuracies about CF and was basically pointless. There are other more accurate and interesting novels and of course some wonderful non-fictions books. I read this novel when it first was published so I could be foggy on details. I think it had to do more with a baby swap in the hospital, one families less than perfect (ie sick with CF) child being given to a family because a hospital worker knows the family. The family then raises a wonderful and healthy and perfect child and is devastated to learn their imperfect, “real” child has CF.”   Paperback and Audio Cassette In Stock/Readily Available.
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Surviving Transplantation-A personal guide for Organ Transplant Patients, their Families, Friends and Caregivers (by John Craven MD and Susan Farrow OT) It was published 1993. 196 pages. May be ordered from: University of Toronto Press, 3400 Nagel Drive, Buffalo, NY 14225 at a cost of $16.95 plus $3.00 P&H, $1.00 P&H for each additional book. Or read online free of charge.

A Time to Die….. (by Lurlene McDaniel, part of her One Last Wish series) 150 pages; Bantam Books;  Dimensions (in inches): 6.88 x 4.19 x .45, ISBN: 0553298097; 1992. One person says: “It’s about a 16 year old girl with CF. After reading the back insert, it says that this series is written for teenagers, but you may still enjoy it, I did. The book is practically a mirror image of what some of our lives may be like, the good, the bad, and the ugly (sorry Mr. Eastwood ) Some may not like the book because of it’s realism. That’s okay. But what I was thinking, I wonder if any of the people who put “red tape” in our way really KNOW what we go through. Maybe if they did, they would be more accepting. Send it to your congressman, send it to insurance companies, send it to your boss, whoever. The point is, this book might help them to realize the struggle most of us go through in our lives. I’d just hope that if people knew, maybe things would be different” A parent of a teenage girl with CF says: “I bought this book for (my child) thinking she might like it…she didn’t read it so I read it myself. It is rather corny, and not accurate as someone else mentioned. Not to mention depressing, so I guess it’s just as well she never read it…I think the title turned her off. Why this person writes these books intended for teenagers I really don’t know. Just my opinion” The publisher, Bantam Doubleday Dell Publishing Group, Inc. says: Sixteen-year-old Kara Fischer has cystic fibrosis and only months to live. But the close-knit bond she develops with Vince, who also has the disease, helps her come to terms with her own illness. Given one last wish, Kara wonders if miracles could really happen.

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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 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;  1992
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Organ Transplants : A Patient’s Guide (by Massachusetts General Hospital Organ Transplant Team, H. F. Pizer) Hardcover – 243 pages (November 1991) Harvard Univ Pr; ISBN: 067464235X    In Stock/Readily Available.
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A Parent’s Guide to Cystic Fibrosis (University of Minnesota Guides to Birth and Childhood Disorder) by Burton L. Shapiro, Ralph C. Heussner 124 pages,  Published by Univ of Minnesota Pr (Trd), February 1991, ISBN: 0816614881   In Stock/Readily Available.
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Gillian: A Second Chance. (by Veronica Stauton) A personal account of the life of Gillian Staunton 240 pages; illustrations; 21 cm Blackwater Press; Dublin; 1991.
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Turn It Into Glory. (by Meg Woodson) A Mother’s moving story of her daughter’s (PWCF) last great adventure. 222 pages; 22 cm,  ISBN: 1556611781, Bethany House Publishers; Minneapolis, MN; 1991. Dana Jarrett, a member of CYSTIC-L, says: “A heart-wrenching story of a mother losing her second child to cystic fibrosis. I would not recommend this to someone whose child is newly-diagnosed. More geared toward the grieving parent. Very emotional.” Another member of CYSTIC-L says: “It’s the mother’s account of the last six weeks of her 23 year old daughter’s life (spent in the hospital). This is the continuation of a couple of other books by the same woman about her daughter. I remember reading the first book, If I Die At Thirty when I was a teenager. Both of these books have very religious overtones. This is not a pull-yourself-up-by-the-bootstaps, everything is for the best book. There is nothing about the daughter’s life in it. It’s only about how she dies. After I finished reading it, I was just numb.”

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Life in My Hands. (By Doub Lab) A personal account of the life of the author who had CF. Paperback (August 1990) Labpro Press; ISBN: 0962921602 A member of Cystic-L says “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 author’s mom writes to Cystic-L “I think it’s great that you can all chat together about your meds, your docs, your experiences. As a mother of one wonderful guy who made a difference in the lives of everyone he knew, I want you to know about his (and my) book. He was born when the life expectancy of CF’s was two years and he lived to be nearly 40. Of course now CF’s sometimes live to be in their ’50’s, ’60’s and more. Life expectancy will surely improve, too, in time. If you would like to read his story, MY LIFE IN MY HANDS, Living on with Cystic Fibrosis, you can order it from Labpro Press, 43-155 Portola Ave., Palm Desert, CA 92260. The price is $6.20 including (book rate) postage.”

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Common Heroes: Facing a Life Threatening Illness. (by Eric Blau) Paperback: 93 pages; Publisher: NewSage Press; (November 1989) ISBN: 0939165120  This book is about people with chronic illnesses. Melissa, a Cystic-L subscriber, says “Among the people featured is a young woman living with CF and she tells her story and how she’s dealing with it on a day-by-day basis. If you don’t have the book, I highly recommend it.”  In Stock/Readily Available.
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Cystic Fibrosis; Index to Modern Information. (by Jonathon Greer) Paperback (September 1988) ABBE Publishers Association of Washington, DC; ISBN: 0881649236
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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. A member of CYSTIC-L says: “Non fiction but reads well, seems it is accurate. If you read the book you might recall the dad was a Sesame Street person; this intrigued me probably because my pwcf was watching Sesame Street at the same time his little girl was being treated. This child in the book was misdiagnosed and the family had some terrible experiences with unkind medical people and also had some wonderful experiences also. The marriage broke up, I think there was a great edeal of strain with the child and serious money problems. The pwcf tried to go to college – Suffolk in Boston I think, but she was not well enough and she died young. There was alot in this book to relate to, it was very bitter sweet.”

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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.
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We Are Not Alone; Learning to Live With Chronic Illness (by Sefra Kobrin Pitzele) 283 pages; Workman Publishing, New York, 1986.
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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
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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. A member of CYSTIC-L says: “It has a teenager with end stage CF as one of the main storylines. It is a really great book, I found it quite true to life. If you read it though, have a couple of boxes of Kleenex available! Even on re-reads I still end up crying my way through a lot of it. PARENTS – before you decide to read it, please be prepared! It deals quite graphically with end stage stuff. It may be more than you wish to deal with at this time.”

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Readings in Cystic Fibrosis by Special Learning Corporation Staff; Paperback (November 1984) Longman Group United Kingdom; ISBN: 089568411X
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Private Worlds of Dying Children by Bluebond-Langner, Paperback (April 1980) Princeton Univ Press; ISBN: 0691028206   In Stock/Readily Available.
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Psychosocial Aspects of Cystic Fibrosis : A Model for Chronic Lung Disease by Paul Patterson; Hardcover (June 1973) Center for Thanatology Research & Education; ISBN: 0930194330   In Stock/Readily Available.
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Cystic Fibrosis by Michael E. Fritz, Hardcover (June 1973) Irvington Pub; ISBN: 0842271333
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Anna Joins In by Katrin Arnold, Renate Seelig (Illustrator) ASIN: 0687015308
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CF in His Corner by Gail Radley
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Faith, Hope, and Luck : A Sociological Study of Children Growing Up With a Life-Threatening Illness by Charles Waddell
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Families in stress : a study of the long-term medical treatment of children and parental stress by Sheila P. Harrisson, ASIN: 0443018855
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The Family Life of Sick Children : A Study of Families Coping With Chronic Childhood Disease by Lindy Burton
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Following Joey Home by Meg Woodson , ASIN: 0310348609
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Good-Bye, Best Friend by Cherie Bennett ASIN: 0061067393
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Helen’s victory: the story of a chest illness by June Mead ASIN: 0900279001
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I’ll Get to Heaven Before You Do! by Meg Woodson ASIN: 0687186110
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If I Die at Thirty by Meg Woodson ASIN: 0310348501
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Time of Her Life by M. Woodson ASIN: 0310348706
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Technical

Cystic Fibrosis in the 21st Century (Progress in Respiratory Research) (Edited By Andrew Bush, Eric W. F. W. Alton, Jane C. Davies, Uta Griesenbach, Adam Jaffe). Hardcover, Publisher: S. Karger AG (Switzerland), October 7, 2005, ISBN: 3805579608.   
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Cystic Fibrosis: New Research (Edited By Margaret A. Harrison). Hardcover, Publisher: Nova Biomedical Books (September 1, 2005), ISBN: 1594541841.   
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Defects of Secretion in Cystic Fibrosis (Advances in Experimental Medicine and Biology) (Edited By Carsten Schultz). Hardcover: 180 pages, Publisher: Springer; 1 edition (February 10, 2005), ISBN: 0387230769.   Defects in Secretion of Cystic Fibrosis presents an overview on current research from leading experts in North America and Europe. This update on cystic fibrosis provides in depth original work as well as review material on many of the relevant physiological and molecular topics in the field. Subjects covered include the interplay of the various epithelial ion channels, the underlying intracellular signal transduction, mucus secretion, and novel approaches to develop drugs against cystic fibrosis. This book brings together physicians, physiologists, and other scientists involved in basic research, from molecular biology to drug design and introduces novel investigative and therapeutic aspects of secretion disorders relevant in cystic fibrosis and related diseases. This book will be of interest to Molecular biologists, physiologists, scientists working in pharmaceutical research and drug developement, physicians and researchers in Cystic fibrosis and related diseases.  
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Journal of Cystic Fibrosis, The Journal of Cystic Fibrosis is the official journal of the European Cystic Fibrosis Society. The journal is devoted to promoting the research and treatment of cystic fibrosis. To this end the journal publishes original scientific articles, editorials, case reports, short communications and other information relevant to cystic fibrosis. The journal also publishes news and articles concerning the activities and policies of the ECFS as well as those of other societies related the ECFS.   ISSN: 1569-1993; Imprint: ELSEVIER; issued quarterly; Commenced publication 2002.   
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Icss 254, Antibiotic Resistance in Cystic Fibrosis -An Emerging Crisis?, (by Tyrone Pitt) Presents the proceedings of a symposium held under the auspices of the Public Health Laboratory Service in London, May 3, 2002.   Paperback: 67 pages, Publisher: Royal Society of Medicine Press; (September 2003) ISBN: 185315539X   In Stock/Readily Available.
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The Cystic Fibrosis Transmembrane Conductance Regulator (Molecular Biology Intelligence Unit), (by Kevin L. Kirk and David C. Dawson) Hardcover: 228 pages Publisher: Plenum Pub Corp; (September 2003) ISBN: 0306478374   
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Cystic Fibrosis Methods and Protocols (Methods in Molecular Medicine) (by William R. Skach, Md. (Editor)). Hardcover – 450 pages (March 2002) Humana Press; ISBN: 0896038971    This handbook for medical researchers presents a wide array of in vitro, cellular, and whole animal protocols. Covering electrophysiology, cell biology, animal models, and gene therapy, the book provides step-by-step instructions for incorporating new approaches into research programs. Specific protocols describe new techniques for diagnosis, in vitro methods for the expression and functional analysis of CFTR, novel biochemical and cellular systems for determining the role of mutations, and in vivo protocols to examine how CFTR dysfunction produces multisystem pathology. The book emphasizes the translation of recent scientific advances into clinical solutions   
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Cystic Fibrosis by Dennis J. Shale (Editor) Hardcover: 172 pages ; Dimensions (in inches): 0.68 x 8.76 x 5.82 Publisher: B M J Books; ISBN: 072790826X; (January 2002)   In Stock/Readily Available.
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Cystic Fibrosis Format: Acrobat Reader (PDF) [System Requirements: File Size: 257K Printable: Yes Macintosh Compatible: OS 9.x or later Windows Compatible: Yes Handheld Compatible: No. This title is not compatible with Pocket PCs, PDAs, or other handhelds. ] Digital: 34 pages Publisher: MarketResearch.com; ISBN: B00008R3NA; (December 7, 2001). This brief provides an overview of the cystic fibrosis market including an introduction to the disease itself and prevalence of cystic fibrosis across the seven major pharmaceutical markets. Current treatments for cystic fibrosis, both pharmacological and non-pharmacological, are examined and the unmet needs of therapy identified. Finally the product pipeline for cystic fibrosis is analyzed in terms of future market potential. All sources used in the development of this brief can be found in the Bibliography.   
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Preconception and Prenatal Carrier Screening for Cystic Fibrosis: Clinical and Laboratory Guidelines Hardcover Publisher: Amer College of Obstetricians; (June 2001) ISBN: 0915473747   
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Cystic Fibrosis : A State-Of-The-Art Series (Reprint of the Thematic Review : Respiration) Paperback (April 2001) S. Karger Publishing; ISBN: 3805572247   
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Psychosocial Aspects of Cystic Fibrosis (Edited by Bluebond-Langner, Rutgers University, Bryan Lask, St. George’s Hospital Medical School, London, and Denise B. Angst, Lutheran General Children’s Hospital, Illinois). 482 pages, 1st edition (January 15, 2001) Hardcover, Oxford Univ Press; ISBN: 0340758910     In Stock/Readily Available.
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Cystic Fibrosis (by William J. Tranquilli, Kurt A. Grimm, Leigh A. Lamont, Margaret E. Hodson, Duncan M. Geddes). Hardcover – 477 pages 2nd edition (August 15, 2000) Oxford Univ Press; ISBN: 0340742089   A textbook reflecting advances in the field, for clinicians, scientists, and paramedical staff. Contributors from the Royal Brompton Hospital and elsewhere review basic molecular genetics and the epidemiology of the disease, and cover the microbiology and immunology of cystic fibrosis, diagnostics and screening, the respiratory system in adults and children, gastrointestinal and liver disease in cystic fibrosis, psychological aspects, and paramedical issues such as physiotherapy and dietary treatment.
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Cystic Fibrosis : Medical Care (by David M. Orenstein, Robert C. Stern, Beryl J. Rosenstein). Lippincott Williams & Wilkins Publishers. May 2000, paperback.  Cystic-L subscriber Barbara Palys says “Definitely not a rehash as it was written for medical professionals and not lay people. It is an excellent book, one of the best ones I have read. It is specifically geared to in-hospital care and frequently encountered situations. Section writers are the top in their field of expertise. The average lay person may have to read it carefully with a medical dictionary by their side. I highly recommend the book.”  In Stock/Readily Available.
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Ion Transport in Exocrine Glands With Reference to Cystic Fibrosis (Comprehensive Summaries of Uppsala Dissertations, 818) (by Ailing Zhang), Paperback (November 1999) Uppsala Universitet; ISBN: 9155443737;
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Cystic Fibrosis in Adults (by James R., Md. Yankaskas (Editor), Michael R., Md. Knowles (Editor), Hardcover (June 1999) Lippincott Williams & Wilkins Publishers; Comprehensive text for the diagnosis and care of adults with cystic fibrosis. Text is organized by the organ systems most affected by CF: molecular and cellular bases of disease pathogenesis, pulmonary disease, gastrointestinal system, and other organ systems. Extensively referenced.
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Study of the Cystic Fibrosis Transmembrane Conductance Regulator (Cftr) Protein in Human and Mouse Vas Deferens (Acta Biomedica Lovaniensia, 189) (by Ingrid Reynaert), Paperback – 140 pages (December 1998) Leuven Univ Pr; ISBN: 9061869404
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Maturational and Electrophysiological Properties of CFTR Proteins Carrying In Vitro Mutagenized R Domains (Acta Biomedica Lovaniensia) (by Anne Vankeerberghen), Paperback – 116 pages (November 1998) Leuven University Press;
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Clinical Practice in Respiratory Care by James B. Fink (Editor), Gerald E. Hunt (Editor) Hardcover (October 1998) Lippincott-Raven Publishers; ISBN: 0397550936   In Stock/Readily Available.
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CFTR and the Molecular Basis of Cystic Fibrosis (Medical Intelligence Unit Series) by Jeffrey Wine, Hardcover, (July 1998) Chapman & Hall; ISBN: 0412134810
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Treatment of the Hospitalized Cystic Fibrosis Patient by David M. Orenstein (Editor), Robert C. Stern (Editor), Hardcover, January 15, 1998, ISBN: 0824795008  Overview of latest developments in the care and effective management approaches for hospitalized cystic fibrosis patients. 18 contributors, 17 U.S.   
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Contemporary Human Behavior Theory: A Critical Perspective for Social Work by Susan P. Robbins, Pranab Chatterjee, Edward R. Canda; Hardcover: 465 pages; Dimensions (in inches): 1.05 x 9.55 x 7.21 Publisher: Allyn & Bacon; 1 edition (November 26, 1997) ISBN: 0205149200. This new book is the first to approach the subject from a comparative theory perspective, including coverage of contemporary knowledge theories as well as traditional theories. A consistent framework for analysis is provided for all of the theoretical systems that are covered. This book encourages readers to develop critical thinking skills in analyzing and comparing theories, and includes contemporary developments in traditional lifespan theory, theories of political economy, and a separate chapter on transpersonal theory (Chapter 12). The book includes explicit content on spirituality, oppression, and social justice. Each chapter includes coverage of the research that supports a particular theory, as well as an analysis of the validity of that research; each chapter also includes a discussion of “Contemporary Issues.” The last chapter, Chapter 13, provides a case example demonstrating how the various theories can be applied to a single case. Social workers, therapists, and psychologists.   NOTE: Melissa of Cystic-L says: “As I was reading the very last chapter of my book for class (yaay:), I came across a paragraph where Cystic-L was mentioned. The author was discussing ways that social workers put their knowledge into practice and a group that was given as an example was the CF population. Cystic-L was mentioned specifically when the author was discussing ways that adults with cf recount their experiences starting from diagnosis. Pretty interesting stuff.”   In Stock/Readily Available.
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A Practical Approach to Pulmonary Medicine by Ronald H. Goldstein (Editor), James J. O’Connell (Editor), Joel B. Karlinsky; Paperback – 605 pages (September 1997) Lippincott-Raven Publishers; ISBN: 0781712378   In Stock/Readily Available.
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Molecular Analysis of CFTR Mutations in Cystic Fibrosis Patients With Atypical CF and in Patients With Congenital Bilateral Absence of the Vas Deferens by Hui Teng; Paperback (July 1997); Coronet Books; ISBN: 906186805X   
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Interpretation of Pulmonary Function Tests : A Practical Guide by Robert E. Hyatt, Paul D. Scanlon, Masao Nakamura Paperback (April 1997) Lippincott-Raven Publishers; ISBN: 0316262617 This volume is a practical guide to the optimal clinical use of pulmonary function tests. The focus of the book is on the clinical utility of the most common tests–what the test measures, what the results mean, what kinds of abnormalities the test can detect, and what kinds of clinical questions the test can answer.Coverage includes tests for measuring airway obstruction, response to bronchodilators, diffusing capacity of the lungs, gas exchange, lung resistance and compliance, distribution of ventilation, and maximal respiratory pressures. Also included are chapters on preoperative pulmonary function testing and tests of exercise capacity. The authors discuss test patterns in various diseases, offer guidelines on when to test and what to order, and explain how to interpret test results. The concluding chapter presents illustrative cases.

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Cystic Fibrosis Pulmonary Infections : Lessons from Around the World (Respiratory Pharmacology and Pharmacotherapy) by A. Bauernfeind (Editor), Melvin I. Marks (Editor), B. Strandvik (Editor) Hardcover, Publication date: June 1996, ISBN: 081765027X
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Cystic Fibrosis : Directory of Authors of New, Medical and Scientific Reviews With Subject Index Paperback, Published by Abbe Pub Assn of Washington Dc, Publication date: May 1996, ISBN: 0788310437
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Cystic Fibrosis — Current Topics (J.A. Dodge, D.J.H. Brock, and J. W. Widdicombe, editors) Volume 1, Hardcover 1993,  ISBN: 0471931012; Volume 2, Hardcover 1994,  ISBN: 0471951668; Paperback 1996,  ISBN: 0471963534 illustrations; 24 cm; J Wiley and Sons; New York.   
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Genetic Studies of the Cystic Fibrosis Transmembrane Conductance Regulator Gene in Belgian CF Patients (Acta Biomedica Lovaniensia , No 110) by Harry Cuppens; Paperback (November 1995) Coronet Books; ISBN: 9061866820
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Cystic Fibrosis by Margaret E. Hudson, Duncan M. Geddes (Editor); Hardcover (October 1994) Lippincott Williams & Wilkins Publishers; ISBN: 0412484404
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Inhalation Therapy : Roche and Genentech Symposium, European Cystic Fibrosis Conference, Paris, June 1994 (Respiration, Vol 62, Suppl 1) by Ch. Koch, E. Puchelle (Editor), Paperback (April 1995) S. Karger Publishing; ISBN: 3805561644
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Family Nursing : The Case of Cystic Fibrosis by Dorothy A. Whyte, Hardcover (May 1994) Avebury; ISBN: 1856285243
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Manual of Clinical Problems in Pulmonary Medicine (Spiral Manual Series) by Richard A. Bordow (Editor), Kenneth M. Moser (Editor), Paperback (October 1995), Little Brown & Co; ISBN: 0316102709   In Stock/Readily Available.
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Research on childhood diseases by entrepreneurs : hearing before the Committee on Small Business, United States Senate, One Hundred Third Congress, second session … Thursday, May 26, 1994 ASIN: 0160467209
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Cystic Fibrosis (Venture Books : Health and the Human Body) by Alvin Silverstein, Virginia Silverstein, Robert Silverstein List:  Published by Franklin Watts, April, 1994, ISBN: 0531125521
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Cystic Fibrosis, Basic and Clinical Research :Proceedings of the 17th Annual Meeting of the European Working Group for Cystic Fibrosis, Copenhagen by Niels Hoiby, Svend Stenvang Pedersen (Editor) Hardcover,  Published by Excerpta Medica, Publication date: April 1993, ISBN: 0444813780
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Cystic Fibrosis (Lung Biology in Health and Disease, Vol 64) by Pamela B. Davis (Editor) Hardcover,  Published by Marcel Dekker, Publication date: February 1993, ISBN: 082478815X
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Clinical Ecology of Cystic Fibrosis : Proceedings of the 18th European Cystic Fibrosis Conference, Madrid, 21-26 May 1993 (International Congress, No) by H. Escobar, F. Baquero, L. Suarez (Editor) Hardcover,  Published by Excerpta Medica, October 1993, ISBN: 0444816704
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Cystic Fibrosis by J. C. Warner (Editor) Hardcover,  Hardcover: 320 pages Publisher: W.B. Saunders Company; ISBN: 0443047162; (December 1992)
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The Identification of the Cystic Fibrosis Gene : Recent Progress and New Research Strategies by Lap-Chee Tsui, Giovanni Romeo, Rainer Greger, Sergio Gorini (Editor) Hardcover,  Published by Plenum Pub Corp, Publication date: July 1991, ISBN: 0306439093
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Cystic Fibrosis : Infection, Immunopathology, and Host Response (Allergy and Immunology : Clinical and Experimental Progress) by Richard B. Moss (Editor) Hardcover,  Published by Humana Press, Publication date: September 1990, ISBN: 0896031926
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Cystic Fibrosis (Peter Goodfellow, editor) Part of the Molecular Medicine Series 96 pages; illustrations; 24 cm Oxford University Press; New York, Oxford; 1989.
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Cystic Fibrosis : Nutritional and Intestinal Disorders by Ross W. Shepherd, Geoffrey J. Cleghorn, Hardcover,  Published by CRC Press, Publication date: October 1989, ISBN: 0849369541   
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Cystic Fibrosis; Index to Modern Information by Jonathon Greer, Paperback (September 1988) ABBE Publishers Association of Washington, DC;ISBN: 0881649236
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Cellular and Molecular Basis of Cystic Fibrosis by G. Mastella (Editor); Hardcover (December 1988) San Francisco Press; ISBN: 0911302638
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Genetics and Epithelial Cell Dysfunction in Cystic Fibrosis : Proceedings (Progress in Clinical and Biological Research, Vol 254) by John R. Riordan (Editor) Hardcover (January 1988) Wiley-Liss; ISBN: 0471610429 Click Here to Learn More/Check Price

Multipoint Mapping and Linkage Based upon Affected Pedigree Members : Genetic Analysis Workshop 6 : Proceedings of a Workshop Held at Gulf Park, Long Beach, Mississippi, October 10-12, 1988 by Robert C. Elston, M. Anne Spence
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Mucoviscidose (onze erfelijkheid); Authors: Lieve Denayer and Gerry Evers-Kiebooms; other contributors: Prof. Dr. Jean-Jacques Cassiman (well known geneticist), Prof. Dr. Jean-Pierre Fryns, Prof. Dr. Herman Van den Berghe

Published by: Uitgeverij Acco (Academische Co=F6peratief c.v.), Tiensestraat 134-136, B-3000 Leuven, Belgium, Koningin Wilhelminalaan 17, Postbus 395, 3800 AJ Amersfoort, the Netherlands; 1988. ISBN: 90 334 1855 X

A good book (in Dutch) to read on the hereditary aspects of CF. (I suspect this is the first book on a series on the topic). Topics covered are:

  1. Ziektebeeld en behandeling (symptoms and treatment)
  2. Psychische ontwikkeling van het muco-kind (psychological development of the child with CF)
  3. Gevolgen voor het gezin (effects on the family)
  4. Gegevens over erfelijkheid (data on heredity)
  5. Mucoviscidose: een autosomaal recessieve aandoening (CF: an autosomal recessive disease)
  6. Nieuwe mogelijkheden om te bepalen wie drager is van het muco-gen (new possibilities to determine who is carrier of the CF-gene)
  7. Prenatale diagnose van mucoviscidose (prenatal diagnosis of CF) – prenatale diagnose door vruchtwateronderzoek (prenatal diagnosis through amniocentesis) – prenatale diagnose door DNA-onderzoek op chorionweefsel (prenatal diagnosis through DNA-analysis on chorionic villi tissue)

Animal Models for Cystic Fibrosis : The Reserpine-Treated Rat by J. R. Martinez (Editor); Hardcover (June 1985) San Francisco Press; ISBN: 0911302549
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Immunological Aspects of Cystic Fibrosis (CRC Series in Immunology and Lymphoid Cell Biology) by Emmanuel Shapira, Gregory B. Wilson (Editor) Hardcover (January 1985) CRC Press; ISBN: 084936373X
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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,  ISBN: 0865771146 Thieme-Stratton; New York; 1984.
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Cystic Fibrosis : Horizons : Proceedings of the Ninth International Cystic Fibrosis Congress, Brighton, England. June 9Th-15th 1984 (by David Lawson, Editor)
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Textbook of Cystic Fibrosis by John D. Lloyd-Still Textbook Binding Publisher: Year Book Medical Pub; ASIN: 0723670269; (March 1983) 9
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Cystic Fibrosis (Margaret E. Hodson, A.P. Norman, J.C. Batten, editors) 282 pages; illustrations; 24 cm Bailliere Tindall; London; 1983.
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Fluid and Electrolyte Abnormalities in Exocrine Glands in Cystic Fibrosis by P. M. Quinton (Editor) Hardcover (June 1982) San Francisco Pr; ISBN: 091130245X
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Current Problems and New Trends in Cystic Fibrosis by M. Schoeni (Editor); Hardcover Vol 014 (December 1981) S. Karger Publishing; ISBN: 3805534175
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Cystic Fibrosis ASIN: 019262024X
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Cystic fibrosis : manual of diagnosis and management by Charlotte M. Anderson, ASIN: 0632004789
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Cystic fibrosis and DNA tests : implications of carrier screening ASIN: 0160379865
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Cystic Fibrosis of the Pancreas by Anderson, ASIN: 0397603894
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Cystic fibrosis; [papers and discussion of the] Ciba Foundation Study Group No. 32 ASIN: 0700013733
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Cystische Fibrose : leben mit einer chronischen Krankheit by Gustel Matthias Schmitt, ASIN: 3801704882
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Fundamental problems of cystic fibrosis and related diseases; selected papers ASIN: 0883720191
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Genetic counseling and cystic fibrosis carrier screening : results of a survey ASIN: 0160380936
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Genetic tests and health insurance : results of a survey : background paper ASIN: 016038138X
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Cystic fibrosis : projections into the future : an international conference held at the Israel National Academy of Sciences, Jerusalem, Israel, May 25-27, 1976 Unknown Binding: 336 pages Publisher: Symposia Specialists Medical Books ; [distributed by] Stratton Intercontinental Medical Book Corp.; ASIN: 0883720426;
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A Perspective of sodium and chloride ion-sensitive electrode sweat tests for screening in cystic fibrosis ASIN: 0903155095
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Problemy medycyny klinicznej i doâswiadczalnej ASIN: 8301036249
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Psychosoziale Versorgung bei Mukoviszidose : Ergebnisse einer multizentrischen Studie by Gerald Ullrich ASIN: 3631457480
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Recent advances in cystic fibrosis research : 8th annual meeting of the European Working Group for Cystic Fibrosis, Bad Gastein, June 2-3, 1978 ASIN: 3805529848
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Mucus secretions and cystic fibrosis : Conference on Mucus Secretions and Cystic Fibrosis, Southern Ontario, October 24-27, 1976 Hardcover Publisher: S. Karger AG (Switzerland); ISBN: 3805526784; (November 1977)
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