Product Description
This publication is the outcome of several years' work on families caring for a child with cystic fibrosis (CF). Four case studies provide a portrayal of the efforts of parents to come to terms with the diagnosis and its implications, and trace the crisis points in the long haul of the illness. ... Read more

Product Description
This book has been created for parents who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells parents where and how to look for information covering virtually all topics related to cystic fibrosis (also fibrocystic disease of pancreas; mucosis; mucoviscidosis; pancreatic fibrosis), from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on cystic fibrosis. Given parents' increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard-copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms. ... Read more

Product Description
The past 30 years have witnessed a dramatic improvement in life expectancy and quality of life for patients with cystic fibrosis. As a consequence, cystic fibrosis is no longer a paediatric disease. In Western Europe and North America 20% of patients are adults. Some adult cystic fibrosis patients have graduated from universities, some have jobs, some are married, and have children. Consequently, the spectrum of symptoms and complications of the basic disease changes. It is important that clinicians recognize the specifically adult related problems and that this knowledge is conveyed to their colleagues. At the same time, the progress of basic science such as genetics, physiology of membranes and immunology have rapidly progressed, all making an impact towards the best possible care for patients. These Proceedings of the 17th Working Group for Cystic Fibrosis provide a wealth of new information in the basic science and clinical treatment of cystic fibrosis. Chapters written by internationally established scientists are provided, which should prove to be of value for paediatricians, chest physicians, microbiologists, and scientists working with cystic fibrosis patients. ... Read more

Product Description

The median age of survival for those with cystic fibrosis has risen considerably in recent years. This text thoroughly examines the developments and breakthroughs which have led to this improvement in life expectancy. With a focus on the latest discoveries in the diagnosis and treatment of the disease, this book provides a comprehensive overview of the past, current and forthcoming advancements in cystic fibrosis research and clinical care.

Product Description
See a day in the life of a preschooler with CF. ... Read more

Customer Reviews (5)

amberrae
I think this book is great.The perspective that it is written from makes it easy for a child to identify with and having the pictures of the treatments and all the children is great.I loved this book becuase it gives people of all ages a a little insight on Cystic Fibrosis.

Excellent book for young children with cystic fibrosis
I have a 5 year old with cystic fibrosis and he was so excited to see pictures of other children having to do what he does every day - use a vest, nebulizer, take enzymes, etc. He just kept repeating "just like me".This has certainly helped him to not feel like he is the only one.

I love this book
This book is a wonderful tool to show your children with Cystic Fibrosis that they aren't alone. They aren't the only one in the world who needs to do these treatments. To be able to see all these children smiling is so beautiful. My son loves looking at this book and has me read it to him over and over. --Charla (A parent of a child with CF)

Such a sweet book....
My 2yr. old son has CF and absolutely loved looking at the pictures of the other children doing what he does daily.I enjoyed reading it to him.What a wonderful learning tool to have for children and adults!Thanks

An informative children's book for CF kids & their families
This picture book tells the story of one day in the life of a little girl fighting Cystic Fibrosis.It was written in order to help these small but mighty few find a sense of commonality and see fun photos of other kids who are just like themselves.Kids will enjoy learning about others their age who do dailytreatments, take many medicines, and have hospital stays, and hopefully feel not so alone in their battle. ... Read more

Product Description
Written by well-known experts in the clinical management ofcystic fibrosis, this practical book is a complete guide tocaring for the patient with cystic fibrosis. The authors offer pragmatic advice on every problem arising during the course of the disease--from treatment of symptoms to referral for lung and liver transplants. This volume is an essential reference for any health care provider treating persons with CF, including pediatricians, pulmonologists, internists, residents, nurses, respiratory therapists, and nutritionists ... Read more

Customer Reviews (1)

Invaluable resource for CF Care Providers
I have kept copies of this excellent resource for residents who rotate through my Pediatric Pulmonology practice.Orenstein, Stern and Rosenstein write in a succinct and clear manner that gets the provider the information needed in care for those afflicted with CF.The book can be read in two weeks of evenings cover to cover.The system approach that they use is helpful and pragmatic.Though the book is dated in its publication, the recommendations that are made for the care and management of CF are still current.The added bonus is the price.Do not be dissuaded by the bargain basement price, the information authors provide for the care and management of CF is priceless. Whenever I get a new CF patient, I give a copy of this book to the primary care physician and I give a copy of the companion book Cystic Fibrosis:A Guide forPatient and Family http://www.amazon.com/Cystic-Fibrosis-Guide-Patient-Family/dp/0781741521/ref=pd_cp_b_2 to the patient.These books make the care and management of CF patients easy to understand and an achievable goal.

Paul K. Nolan, MD, FCCP, FAAP
Pediatric Pulmologist ... Read more

Product Description
Have You or Your Child Been Diagnosed with Cystic Fibrosis?

Find Out How to Take a Pro-Active Approach to Living with CF!

Have you recently had a diagnosis of Cystic Fibrosis? Are you afraid for your future or the future of your child? Have the stories you’ve heard of CF true? Is there something you can do to improve the life and health of a CF child or yourself?
If you’re reading this letter you are no doubt very worried and frightened by the implications of being diagnosed with CF. In the past Cystic Fibrosis almost always meant a short, sickly life – but today, with the advances of research and science, along with the experience of many CF sufferers and their families, Cystic Fibrosis patients can lead much longer, healthy lives.
Recovering from the shock is the first hurdle, but the sooner you start looking into ways to combat the disease, the better your or your child’s chance of enjoying a healthy and vital life for many, many years to come.
Now is the time to get some fundamental understanding of what you are facing – what CF is, how it can be treated and what the future holds.

3 Things You Should Know About Cystic Fibrosis…

1. Approximately 12 Million Americans are carriers of the CF gene.
2. Quality of life and life span have immensely improved since the discovery of the CF in the 1930’s.
3. Research continues to come up with improved techniques and medications to help CF patients live longer, healthier lives.

Most Cystic Fibrosis sufferers are diagnosed early in childhood or infancy; however, no matter when you are diagnosed a PRO-ACTIVE approach to managing the disease ensures a LONGER and HEALTHIER life.
Organizations such as the Cystic Fibrosis Foundation, along with many other groups and research projects are continually finding improved methods to deal with CF and are looking towards a CURE!
You do not have to face this alone! Doctors and other families dealing with Cystic Fibrosis are working together to provide the support you need to deal with CF and get the support you need.
There is hope. There are answers to your questions.In ”Living With Cystic Fibrosis” you can get all the facts and information you need to keep you and your loved ones looking forward towards a healthy future!

Here’s a quick look at what you can learn from the book ”Living With Cystic Fibrosis” :

* Learn how a person gets Cystic Fibrosis and whether it can be prevented.

* Find out how CF affects the body and how to PRO-ACTIVELY manage the symptoms of CF.

* Find out who is most at risk of getting CF and what science is doing to combat it.

* Learn the symptoms that should get you to a doctor and when to suspect a child or young adult is possibly suffering from CF.

* And much much more! ... Read more

Product Description
Over 30,000 people in the US have cystic fibrosis, a life-threatening genetic disease that affects the lungs and digestive system. Physically, fighting it is a very perilous struggle. Emotionally, coping can oftentimes be even harder.With Every Breath consists of stories by and about people living with cystic fibrosis. Created to motivate, inspire, and generate positivity for those living with cystic fibrosis, this book is something you can open time and time again. Designed for all ages, this collection of diverse stories offers unique perspectives from patients, a CF doctor and nurse, and family members of those living with the illness. Patients aren't the only ones who will want to read With Every Breath as family members, friends, and doctors can all find inspiration when they open it. The stories range from overcoming challenges, understanding the disease, lung transplants, diagnosis stories, and more. The book is filled with fun artwork, uplifting quotes, and photography. Celine Dion contributed the Foreword, and there are chapters by people of all ages and walks of life.This book is sponsored by the Boomer Esiason Foundation, and all proceeds will go to cystic fibrosis. ... Read more

Customer Reviews (1)

With Every Breath: Stories by/abt. people living with Cystic Fibrosis
I am glad that I purchased this book!I find it very interesting to read about genetic disorders!It has taught me how challenging a genetic disorder is for ANY family who happens to have a child with CF!Hopefully this book will be a help to families who have a child/children with CF! I've purchased a # of books thru Amazon dealing with the subject of Cystic Fibrosis!The stories presented by the families are really touching and they strive to give their child a life to savor as long as possible! Dawn E. Lowenstein ... Read more

Product Description
This handbook and cookbook is designed to help explain how CF affects the human body, and it explains the role diet plays in managing the disease.The initial sections of the handbook describe the challenge of eating enough of the right types of food to support growth and development, fight infections and lead a productive life.These sections are followed by guidelines for creating a healthy diet that meets the needs of people with CF and tips for applying those guidelines to day-to-day living.The last half of the book contains more than 130 favorite recipes provided by individuals with CF and their families and by University of Wisconsin Hospital and Clinics Clinical Nutrition Department.These easy-to-prepare, appealing foods can help add necessary nutrients and good taste to diets for people with CF. ... Read more

Product Description
Chapters: Atp-Binding Cassette Transporter, Cystic Fibrosis Transmembrane Conductance Regulator, P-Glycoprotein, Abca4, Abcd3, Abcd1, Abcc5, Abcc2, Abcc8, Abcg8, Abcc3, Tap2, Abcd2, Abcg1, Abcg5, Abca2, Abcc11, Transporter Associated With Antigen Processing, Abcb7, Sterolin, Abca3, Abcb9, Abca7, Atp-Binding Domain of Abc Transporters, Rli, Abcb6, Cftr, Abcf2, Abcf1, Abcc6, Abcc10, Abcb8, Abca12, Abcc13, Abca13, Transmembrane Domain of Abc Transporters, Atpase Assay, Abcc4. Source: Wikipedia. Pages: 194. 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: ATP-binding cassette transporters (ABC-transporter) are members of a protein superfamily that is one of the largest and most ancient families with representatives in all extant phyla from prokaryotes to humans. ABC transporters are transmembrane proteins that utilize the energy of adenosine triphosphate (ATP) hydrolysis to carry out certain biological processes including translocation of various substrates across membranes and non-transport-related processes such as translation of RNA and DNA repair. They transport a wide variety of substrates across extra- and intracellular membranes, including metabolic products, lipids and sterols, and drugs. Proteins are classified as ABC transporters based on the sequence and organization of their ATP-binding cassette (ABC) domain(s). ABC transporters are involved in tumour resistance, cystic fibrosis, bacterial multidrug resistance, and a range of other inherited human diseases. ABC transporters utilize the energy of ATP hydrolysis to transport various substrates across cellular membranes. They are divided into three main functional categories. In prokaryotes, importers mediate the uptake of nutrients into the cell. The substrates that can be transported include ions, amino acids, peptides, sugars, and ...More: http://booksllc.net/?id=1551873 ... Read more

Product Description
Walter is an inspiring 42 year old male with Cystic Fibrosis. His lung function is well below 50% of what it should be, but he has decided to cycle from Paris to Istanbul. He brings with him a team of friends consisting of a film-guy Lucas, a journo called Heather, mate David is the medic and Troy is the mechanic who will also drive the support vehicle.

Will they make Istanbul in one piece? Read about their adventures as they battle with infections and breakdowns.

People with CF currently live to be about 35 years of age, when Walter was diagnosed in 1975 people lived to be about 20. People born with CF today may well live much longer, who knows what research will bring! ... Read more

Customer Reviews (1)

Curious on the insight of others dealing with CF
Being a fellow person stricken with Cystic Fibrosis, I can relate to alot of what the author went through. I enjoyed her book, especially the first half, then I feel she dabbed too much into her relationship with her beau and the age old "why me" mentality. I've come to the conclusion that she was clearly having a rough time, presumably a lung infection, at the time she was writing much of this. ... Read more