Customer Reviews (2)

Excellent book giving a family perspective on coping with CF
Cloyce Jones is clearly a remarkable woman. She has a strength that most of us can only dream of. This book portrays her family's lives as they cope with death, illness and then the happiness that the birth of healthy child and eventually a successful lung tranplant for Tara bring. With CF it is often one challenge after another but this family found unending courage to battle on. I was saddened by the extra stress caused to a sick child by insurance rules that meant they had to travel hundreds of miles to retain their coverage. It was however warming to read of the joy that the 'Wish Upon a Star Foundation' was able to bring.

Bob Derr, author of "Burke's Tour"
I appreciate the willingness of the author to share this remarkable story -- it creates additional awareness of the disease and generates funds to help researchers find beneficial treatments and a cure for this disease.Our son, Burke (who died due to CF in 1997), would very much have appreciated the family emphasis here. ... Read more

Product Description
Cystic fibrosis (CF) is a complex multisystemic disease requiring specialized care. It is characterized by progressive pulmonary decline, with intermittent worsening of lung function, often called pulmonary exacerbations. Eighty-five percent of all deaths from CF are a result of pulmonary disease, and pulmonary exacerbations are associated with decline in lung function. Treating pulmonary exacerbations requires a multifaceted approach and includes a multidisciplinary team composed of a physician, nurse, respiratory therapist, physical therapist, and nutritionist. Recently, the Cystic Fibrosis Foundation published guidelines addressing the comprehensive treatment of pulmonary exacerbations. This article outlines the treatment goals established by these guidelines, including the evaluation and treatment of comorbid conditions (eg, CF-related diabetes) and serious complications associated with CF exacerbations (eg, pneumothorax). Proper treatment of pulmonary exacerbations in CF patients will continue to improve their health and quality of life. ... Read more

Product Description
More than just a history, this book provides a unique blend of science, clinical concerns, and warm personal accounts for the benefit of all who have been touched by Cystic Fibrosis. It tells the compelling story of the efforts of investigators, clinicians, and members of the CF community, documenting the rapid progress of research and treatment and dramatic improvement in survival rates since the first description of the disease in 1938. The editor has created a highly readable and well-organized tale in 32 stand-alone chapters, drawing on the heartfelt words and vivid narratives of patients, physicians, researchers, and volunteer leaders. The human dimensions of the disease emerge through frank discussions of political and social issues linked to vital discoveries, moments of triumph, uncertainties and disappointments. ... Read more

Customer Reviews (1)

Personal Review -- A CF Patient's Perspective
"Cystic Fibrosis in the 20th Century" gives its reader a thoughtful and comprehensive look, from many perspectives, inside one of the most challenging genetic disorders, both to live with...and to treat.I have had the opportunity to read many, many books.And I have to admit that this very well-written book is a definite "must read" and is certainly a worthwhile addition, not only to those in the medical field, but to "anyone's" personal library. ... Read more

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This up-to-date and comprehensive set of two CD-ROM discs provides a superb collection of official Federal government documents on the subject of cystic fibrosis. Cystic fibrosis (CF) is an inherited disease of the mucus and sweat glands. It affects mostly your lungs, pancreas, liver, intestines, sinuses and sex organs. CF causes your mucus to be thick and sticky. The mucus clogs the lungs, causing breathing problems and making it easy for bacteria to grow. This can lead to problems such as repeated lung infections and lung damage.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. There is no other reference that is as fast, convenient, and portable - everything you need to know, from the federal sources you trust. This thoroughly researched collection presents vital information from many authoritative sources: Food and Drug Administration (FDA), Centers for Disease Control (CDC), National Institutes of Health (NIH) and the relevant institute for this disease, and others.In addition to the comprehensive disease-specific coverage, this disc set also includes our Medical Encyclopedia, a $19.95 value! The Encyclopedia presents a collection of official documents about a wide range of medical topics, diseases, illnesses, health and wellness. There is vital information from the National Institutes of Health (NIH), the Centers for Disease Control (CDC), National Cancer Institute, and more. Topics covered include: major diseases, including cancer, heart and vascular disease, stroke, blood diseases and disorders, lung diseases, and neurological disorders such as dementia and epilepsy * CDC Health Topics A to Z, Foodborne Illnesses, Infants and Children, Injuries, Occupational Health, Older Adults, Women * CDC Travelers' Health - Destinations, Vaccinations, Diseases, Mosquito, Tick, Food, Water, Clinics, Yellow Book, Children, Airplanes, Cruise Ships, Special Needs, Relief Workers, * Dietary Guidelines * NIH A to Z from abnormalities to X-rays.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 67 of the best sites for medical information! Built-in weblinks let you quickly check for the latest clinical updates directly from the government and the best commercial portals, news sites, reference/textbook/non-commercial portals, and health organizations. ... Read more

Product Description
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.) ... Read more

Product Description
Although respiratory complications are the major cause of morbidity and mortality in cystic fibrosis (CF), the outlook for patients is improving considerably due to advances in the study and therapy of the disease. This book offers recent perspectives on the status of inhaltion therapy, as well as the pathophysiological procesess underlying CF pulmonary disease. These papers review the effectiveness of both well-established inhalation therapies and novel therapies such as rhDNase. Also discussed are various factors which may optimize or compromise the efficient delivery of such treatments. Information on the effects of different drug/nebulizer combinations and the clinical benefits or hazards of inhalation antibiotic therapy is provided. ... Read more

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This digital document is an article from Southern Medical Journal, published by Southern Medical Association on December 1, 2001. The length of the article is 350 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: SUR9 Heart-lung-liver transplant for cystic fibrosis. (Surgery).(Brief Article)
Author: Paul E. Wise
Publication: Southern Medical Journal (Refereed)
Date: December 1, 2001
Publisher: Southern Medical Association
Volume: 94Issue: 12Page: S32(1)

Article Type: Brief Article

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Purchase includes a free trial membership in the publisher's book club where you can select from more than a million books without charge. Chapters: Huntingtin, Cystic Fibrosis Transmembrane Conductance Regulator, Parkin, Dab1, Factor Xi, Aspm, Factor Viii, Research of Down Syndrome-Related Genes, Phenylalanine Hydroxylase, Factor Ix, Δf508, Ifi202, Common Gamma Chain, Usher 1c. Source: Wikipedia. Free updates online. Not illustrated. Excerpt: The Huntingtin gene, also called HTT or HD (Huntington disease) gene, or the IT15 ("interesting transcript 15") gene codes for a protein called the huntingtin protein. The gene and its product are under heavy investigation as part of Huntington's disease clinical research. It is variable in its structure as there are many polymorphisms of the gene which can lead to variable numbers of glutamine residues present in the protein. In its wild-type (normal) form, it contains 6-35 glutamine residues, however, in individuals affected by Huntington's Disease (an autosomal dominant genetic disorder), it contains greater than 36 glutamine residues (highest reported repeat length is about 250). Its commonly used name is derived from this disease, previously the IT15 label was commonly used. The mass of huntingtin protein is largely dependent on the number of glutamine residues it has, the predicted mass is around 350 kDa. Normal huntingtin is generally accepted to be 3144 amino acids in size. The exact function of this protein is not known, but it plays an important role in nerve cells. Within cells, huntingtin may be involved in signalling, transporting materials, binding proteins and other structures, and protecting against programmed cell death (apoptosis). The huntingtin protein is required for normal development before birth. It is expressed in many tissues in the body, with the highest levels of expression seen in the brain. The 5' end of the HD gene has a sequence of 3 DNA bases, cytosine-...More: http://booksllc.net/?id=3557975 ... Read more

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This digital document is an article from MedSurg Nursing, published by Thomson Gale on October 1, 2007. The length of the article is 3798 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

From the author: Chronic incurable pulmonary infections are the greatest threat to well-being and longevity for adults with cystic fibrosis (CF). Aggressive antibiotic therapy is required for infectious exacerbations. Knowledge of CF-related antibiotic therapy ensures that the patient receives maximum benefit with decreased likelihood of complications.

Citation Details
Title: Antibiotic therapy for pulmonary exacerbations in adults with cystic fibrosis.(CNE SERIES)(Author abstract)
Author: Ellen H. Elpern
Publication: MedSurg Nursing (Magazine/Journal)
Date: October 1, 2007
Publisher: Thomson Gale
Volume: 16Issue: 5Page: 293(7)

Article Type: Author abstract

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The Queen's University of Belfast, U.K. Research on the genetics, cell biology, and clinical aspects of cystic fibrosis, for clinicians and researchers. 36 contributors, 17 U.S. ... Read more

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Chapters: Cystic Fibrosis, Rickets, Coeliac Disease, Measles, Mumps, Coxsackie a Virus, Fragile X Syndrome, Sudden Infant Death Syndrome, Mmr Vaccine, Neonatal Heel Prick, Rotavirus, Meconium, Meconium Aspiration Syndrome, Pertussis, Febrile Seizure, Scarlet Fever, Rubella, Growth Hormone Treatment, Lesch-nyhan Syndrome, Childhood Obesity, Nocturnal Enuresis, Newborn Screening, Spina Bifida, Otitis Externa, Otitis Media, Chickenpox, Gastroenteritis, Neonatal Jaundice, Hip Dysplasia, Kawasaki Disease, Henoch-schönlein Purpura, Pulmonary Hypoplasia, List of Youngest Birth Mothers, Transient Synovitis, Menarche, Congenital Adrenal Hyperplasia, Juvenile Idiopathic Arthritis, Lipoid Congenital Adrenal Hyperplasia, Rh Disease, Developmental-Behavioral Screening and Surveillance, Inborn Error of Metabolism, Nephrotic Syndrome, Precocious Puberty, Neonatal Intensive-Care Unit, Homesickness, Primitive Reflexes, Reye's Syndrome, Shwachman-bodian-diamond Syndrome, Diamond-blackfan Anemia, Child Bone Fracture, Failure to Thrive, Eye Exercises, Wilms' Tumor, Delayed Puberty, Parvovirus B19, Craniosynostosis, Toddler, Infant Respiratory Distress Syndrome, Rotavirus Vaccine, Dopamine-Responsive Dystonia, Hypomagnesemia With Secondary Hypocalcemia, Croup, Fetus in Fetu, Baby Colic, Coarctation of the Aorta, 22q13 Deletion Syndrome, Hemolytic Disease of the Newborn, Bartter Syndrome, Infant Massage, Crigler-Najjar Syndrome, Necrotizing Enterocolitis, Ponseti Method, Dubowitz Syndrome, Congenital Hypothyroidism, Aarskog-Scott Syndrome, Child Life Specialist, Foreign Body, Congenital Adrenal Hyperplasia Due to 11β-Hydroxylase Deficiency, Video Game-Related Health Problems, Germinoma, Birth Mass, Congenital Adrenal Hyperplasia Due to 3 Beta-Hydroxysteroid Dehydrogenase Deficiency, Small for Gestational Age, Bronchiolitis, Viability, Persistent Truncus Arteriosus, Chédiak-higashi Syndrome, Constitutional Growth Delay, Alveolar Capillary Dysplasia...More: http://booksllc.net/?id=63526 ... Read more

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Chapters: Grégory Lemarchal, Frankie Abernathy, Bob Flanagan, Hugh W. Pinnock, Bill Williams, Laura Rothenberg, Stu Calver. Source: Wikipedia. Pages: 30. Not illustrated. Free updates online. Purchase includes a free trial membership in the publisher's book club where you can select from more than a million books without charge. Excerpt: Grégory Jean-Paul Lemarchal (May 13, 1983 April 30, 2007) was a French singer who rose to fame by winning the fourth series of the reality TV programme Star Academy France, broadcast on the TF1 television network. He sold over 1 million albums in France, becoming the second highest-selling album of Star Academy France winner, behind Jenifer Bartoli, who sold 1.3 million albums in 2007. Lemarchal was born in La Tronche, Isère to Pierre Lemarchal and Laurence. He had a sister named Leslie. At twenty months of age, he was diagnosed with cystic fibrosis, a hereditary disease which affects the lungs, liver, pancreas and intestine. Growing up near Chambéry, Lemarchal enjoyed sports such as basketball and football, and even considered to be involved in sport journalism. Nevertheless, his passion for music and lifting dance was a force he could not resist. This was proven when he became the winner of Lifting France of Rock 'N' Roll, a rock 'n' roll dancing competition, in 1995 at the age of 12. In 1998, Lemarchal tried out for a talent show, Graines de stars, by doing a solo performance, singing Daniel Balavoine's "Le Chanteur", as well as performing a trio with two other contestants by singing "Foule sentimentale" by Alain Souchon. However, it was unsuccessful. Nevertheless, his brilliant performances in the show catapulted him into fame that he became a local celebrity. In May 2003, Lemarchal was involved in a comedy musical theater entitled Adam and Eve which was directed by Paul Tordjmann. Sponsored by Sony Music, AB Prod, Radio Scoop and Partouche, the musical theater had ambitious plans to ma...More: http://booksllc.net/?id=4601789 ... Read more

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The "British Medical Bulletin" covers the latest research and clinical findings in specific areas of medicine. It provides research from clinicians and reseachers accompanied by graphs, illustrations and photographs, to provide coverage of the subject. ... Read more

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This digital document is an article from Southern Medical Journal, published by Southern Medical Association on September 1, 2004. The length of the article is 2197 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Fibrosing colonopathy in an adult cystic fibrosis patient after discontinuing pancreatic enzyme therapy.(Case Report)
Author: Elizabeth H. Mack
Publication: Southern Medical Journal (Refereed)
Date: September 1, 2004
Publisher: Southern Medical Association
Volume: 97Issue: 9Page: 901(4)

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This digital document is an article from Family Practice News, published by Thomson Gale on September 1, 2005. The length of the article is 732 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Keppra, Tag-It Cystic Fibrosis Kit.(New & Approved)
Author: Damian McNamara
Publication: Family Practice News (Magazine/Journal)
Date: September 1, 2005
Publisher: Thomson Gale
Volume: 35Issue: 17Page: 76(1)

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