Product Description
Cystic fibrosis is the most common life-threatening inherited disease in the UK and Europe. It affects around 1 in 2500 live births in the UK. There have been enormous advances in the treatment of CF over the last 40 years, with life expectancy increasing from just 5 years in 1964 to mid 30s today, and it now affects as many adults as children. The burden of care for CF patients is, however, considerable, and with the increase in life expectancy the impact of CF on respiratory medicine has increased considerably.
Part of the Oxford Respiratory Medicine Library series, this pocketbook aims to be a concise companion for all health care professionals who manage, or come across, patients with CF. The book covers all aspects of care, including both paediatric and adult-specific issues. The book will appeal to a wide variety of health professionals in respiratory medicine, paediatrics, and primary care. ... Read more

Product Description
This one-of-a-kind guide offers clear explanations and real-world advice on cystic fibrosis and its management. Here you'll find practical and reassuring information on day-to-day concerns--school, travel, exercise, nutrition, medication--as well as on physiological effects, long-term issues, and prospects for a cure. Cystic Fibrosis offers straightforward answers to the questions most frequently asked by patients and families-- what causes cystic fibrosis; how it affects body systems; what pharmacological, surgical, and physical therapies are most effective; what roles exercise, diet, and nutrition play; what complications can occur and how they can be managed; when and why a lung transplant should be considered; what psychological effect the disease has on the patient's family; and how the special needs and concerns of adult CF patients can be addressed. ... Read more

Product Description
Univ. of Pittsburgh, PA. Text is designed specifically for patients with cystic fibrosis and their families. Explains the disease process, outlines the fundamentals of diagnosing and screening, and addresses the challenges of treatment for those living with CF. Includes new material on carrier testing, infection control, and more. Previous edition: c1997. Softcover. ... Read more

Customer Reviews (12)

BEST book on CF around
This is a great book.My daughter has CF and this is the book the Doctors gave us.My daughter is treated at one of the top CF centers in the world, so if they use this book only that said a lot to me.I read another before this one and this is by far the best around.Dr O is talking about an update, but is really busy with research.they hope to do another soon.either way it still has lots of valuable info in it.priceless.

Best CF Book Ever
My daughter was diagnosed in 1997 at 1 month of age.Fortunately for our family we had the best specialist to help diagnose and treat her condition almost from day 1 of her life.And her doctor is none other than Dr. Orenstein himself (or just Dr. O to us).I can speak from personal knowledge that he is without a doubt the most informative doctor I have ever been around.He truly cares about the children in his care and he takes a proactive role in their health and well-being.His book is considered the CF bible by those in the know in the Pediatric Pulmonary field.As you read this picture a man with a bow tie and sandals explaining this to you.It is very easy to read and understand which when it comes to this disease is very important.I am happy to say that my daughter is almost 12 and thanks to Dr. O and his staff is in excellent health.If you know someone with this disease get them this bookor better yet get it for yourself as well.Knowledge and understanding of the disease can really help.

An Excellent Book on CF Care
This book accurately describes the disease cystic fibrosis (CF) and offers guidance in self-management on day to day problems.As a mother of a son who has CF, I highly recommend this book to any family dealing with CF.

A must have if you are a CF Parent
I eagerly await the 3rd edition of this book.As a fully involved CF parent, my 8y/o daughter's care has benefited from my increased knowledge.I can form theories and question her caregivers from a more informed perspective and that is a win-win situation.If you have a child with CF, you should have this book.I call it the CF Bible.(Although encyclopedia would be a more accurate description.)I feel this book should be given to the parents of all newly diagnosed children.

Finally, an update source of information!
Im a teenager and was diagnosed with CF when I was born in 1989.
It was recently that I wanted to do some more reading on my disease. I looked through some books and was shocked by what I was reading. As many of you know, the out-of-date books on CF can have some very frightening information, like death and more infections, and etc. It was I discovered this book that I was so much more relaxed about my condition. This book is up-to-date and tells the real facts about this disease. After reading this, my disease doesn't scare me anymore.
If you are a teen, like me, I suggest you read thid.
If you know anybody with CF, you should read this book or have them read this. Don't let them read those early books on CF with the grim facts...have them read this with the true and helpful facts. ... Read more

Product Description
These beautifully illustrated and fun-to-read storybooks simplify and normalize complicated childhood conditions, like cystic fibrosis. When read aloud, other children can identify why a peer may be treated differently and begin to empathize with them. In addition, children whose conditions set them apart as being different begin to feel accepted and safe. Each book includes a Kids' Quiz to reinforce new information and Ten Tips for Teachers to provide additional facts and ideas for teacher use.

In Taking Cystic Fibrosis to School, Jessie explains to her classmates that even though she has cystic fibrosis, she can still attend school. ... Read more

Customer Reviews (2)

Great resource for parents and fun for kids
As a parent educator and a mom of 2 kids with cystic fibrosis, I can't say enough about this book and the whole series in fact (there is one for diabetes, asthma and many other conditions). Young children learn best from pictures and the artwork in this is great. There is nothing "scary" in it about having CF, it is informative, matter-of-fact and hopeful.

My own two children (with CF) loved it when they were younger and received a black and white version from the CF clinic as a coloring book. I highly recommend it for younger children with CF and their siblings.

For a parenting book about how to raise kids who have CF and other health issues, see: Parenting Children With Health Issues: Essential Tools, Tips, and Tactics for Raising Kids With Chronic Illness, Medical Conditions, and Special Healthcare Needs

Informative and a great read for kids
This book is terrific.It is great for any child that is in the beginning years of school. It educates the reader about cystic fibrosis and assists children in dealing with classmates or friends who may have cystic fibrosis.My seven year old son thought it was informative and fun to read.There should be more books of this kind. ... Read more

Product Description
The tragedy of cystic fibrosis has been touchingly recounted before, but this is the first book to portray the symbiotic relationship between twins who share this life-threatening disease through adulthood. Isabel Stenzel Byrnes and Anabel Stenzel tell of their struggle to pursue normal lives while grappling with the realization that they might die young. Their story reflects the physical and emotional challenges of a particularly aggressive form of CF and tells how the twinsbicultural heritage Japanese and German influenced the way they coped. The Power of Two is an honest and gripping portrayal of day-to-day health care, the impact of chronic illness on marriage and family, and the importance of a support network to continuing survival. These two remarkable sisters have much to teach about the power of perseverance and about the ultimate power of hope. ... Read more

Customer Reviews (20)

parent of CF teenager
I purchased this book based on reviews.I found it to be very depressing.Perhaps since my hnousehold lives with this devastating disease daily, it was hard to take.Very realistic, and not many good things.My idea was for my teenager to read something offering hope in a positive manner. The book was not enjoyable reading to me or to my teenager. Too depressing by far.Maybe good for someone wanting to know about the disease, though. Maybe not.

A powerful story and a marvellously written memoir
I just finished this book and am bowled over. What an amazing, generous, vivid memoir. I had to close the book and leave the room so my kids wouldn't see me crying after I read the last chapter.

A Powerful Duet
The Power of Two is an amazing "Duet" written by twin sisters with a powerful will to live inspite of the challenges of living with a deadly genetic disease. Each takes turns "singing" the melodies of her own unique yet shared experiences. This is no sugar-coated fairy tale. It is a novel about survival even though the medical odds are stacked against you. The physical, social, psychological struggles, failures and triumphs are explicitly detailed. You will weep, you will cringe, you will exalt as they progress from climbing a few stairs with difficulty to climbing Yosemite's Half Dome!

You'll Never Take the Gift of Life for Granted Again
In "The Power of Two: A Twin Triumph over Cystic Fibrosis," we meet identical twins, Isabel and Anabel Stenzel, who were born with a deadly disease: cystic fibrosis (CF). As adults, the sisters underwent the only "cure" for CF -- lung transplantation -- and are now living their lives at full-speed after childhoods dominated by chest percussions and drug therapy, numerous and lengthy hospitalizations, constant medical scrutiny, and watching their friends with CF die at young ages. "The Power of Two" is a beautifully written book that will amaze you with its brutal honesty, move you to tears, and inspire you to count your blessings. The remarkable Stenzel twins have an extraordinary lesson to teach us all: never give up, live life to the fullest, and don't take the incredible gift of breath for granted. Their story will linger in your heart long after you've closed this book.

The Power of Two: A Twin Triumph over Cystic Fibrosis
What a powerful book! The twins take you through a very tough physical journey of their lives. I could not put this book down, and I would be shocked if it did not touch your heart. This book is truly inspiring! ... Read more

Product Description
Cystic Fibrosis is the United Kingdom's most common life-threatening inherited disease affecting over 8,000 people. Cystic Fibrosis affects the internal organs, especially the lungs and the digestive system, making it hard for sufferers to breathe and to digest food. Life expectancy has improved and is improving but, at present, averages only 31 years.This book tells the story of one family, our family. It recalls memories of living with something that turned our life upside down and inside out. It made us see life in a wholly different way.This is the story of how we faced this terrible disease and how we now are able to see the future in a more positive light. ... Read more

Product Description
This international and authoritative work, which brings together current knowledge in the field of cystic fibrosis, has become established in previous editions as a leading reference in the field.The third edition continues to provide everything that the clinician or allied health professional treating patients with cystic fibrosis will need in a single manageable volume.Thoroughly revised and updated throughout, it reflects the significant advances that have been made in the field since the second edition published in 2000.

Cystic Fibrosis outlines in detail the basic science that underlies the disease and its progression, putting it into a clinical context.Diagnostic and clinical aspects are covered in depth, as are monitoring the condition and the importance of multidisciplinary care, reflected in the sections into which the new edition has been subdivided to improve accessibility.Future developments, including novel therapies, are covered in a concluding section.The clinical areas have been much expanded, with the introduction of separate chapters covering sleep, lung mechanics and the work of breathing, upper airway disease, insulin deficiency and diabetes, bone disease, and sexual and reproductive issues.A new section on monitoring discusses the use of databases to improve patient care, and covers monitoring in different age groups, exercise testing and the outcomes of clinical trials in these areas. Separate chapters are devoted to paramedical issues, including nursing, physiotherapy, psychology, and palliative and spiritual care.

Throughout, the emphasis is on providing an up-to-date and balanced review of both the clinical and basic sciences aspects of the subject, and to reflect the multi-disciplinary nature of the cystic fibrosis care team.Drawing on the expertise of a team of international specialists from a variety of backgrounds, the third edition of Cystic Fibrosis will continue to find a broad readership among respiratory physicians, pediatricians, specialist nurses and other health professionals working with patients with cystic fibrosis. ... Read more

Customer Reviews (1)

Best CF Review
Requires some medical background to digest!Most concise, organized, and complete CF source I have found.Do NOT purchase if you have limited medical background. ... Read more

Product Description

Customer Reviews (52)

Needed this!
I have no self-control, I admit it, so sticking with the SCD is hard for me - even if it is the only thing that really makes me feel better. I found myself getting in a food rut, making the same things over and over and getting sick of them (making it harder to stick to the diet). This cook book gave me all sorts of new things to try, I was excited about the diet all over again, and so far everything I have made has been really easy and delicious! Highly recommend. Nice layout and pictures as well.

outstanding cookbook for Specific Carbohydrate Diet or any low-carb
Fantastic cookbook for those on the SCDiet for ulcerative colitis or Crohn's disease, low-carb or Paleo Dieters. Great use of spices and I really liked the recipe to make my own curry powder. The recipes range from Foccaccia to Beef Vindaloo to Chicken with Lemon Sauce. Can't wait to make some of the desserts. Wonderful photography.
If I could only have one cookbook in my house it would be this one and that's saying a lot since I own a lot of cookbooks, but this one has very special recipes not found in many places.

Fresh, wonderful recipes
I love this whole book, and I tell everyone I know with digestive ailments about it. As I write I have walnut parmesan chicken dredge in almond flour in my refrigerator. It's so good that I eat it cold when I'm on the run.

Great Ideas, sometimes too far out there
Awesome cookbook, very culturally diverse. Can't imagine eating some of those foods. But the other recipes more than make up for it.

Contains illegal SCD ingredients
I was excited to get this book, the recipes look pretty good. The very first item I made, Lemon Cookies, contained baking powder, which is specifically illegal on the SCD diet. ... Read more

Product Description
Cystic Fibrosis: The Ultimate Teen Guide leaves no aspect of this disease 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. ... Read more

Customer Reviews (3)

Family members needing educating
Definately a book that family members should read.Even though family members may be very close to someone with cf, there is still that denial that comes with cystic fibrosis, "he/she looks great".If this book had been around when my son was younger, I would have made sure that certain family members had their own copy to read.

For Those Who Need To Know
Cystic fibrosis ismuch more than a chronic, life-threatening medical condition. The disease is bad enough, but it has far-reaching effects on many parts of the body. Those who suffer with it are condemned to a very complicated way of life they'd never voluntarily choose. Friends, family and loved ones are affected by it too.

Melanie Apel deftly guides the reader to an understanding of many facets of CF:biological, emotional, psychological and social.Herpoint of view as insider/outsider/guide is successful and she has both empathy and knowledge based on her experience and training. She's employed a good voice for thetarget audience, too--it's direct and doesn't sidestep issues, there are lots ofreal-life stories, and when she explains the science end of things she doesn'ttalk down to readers or become too overwhelmingly complicated.

The last part of the book is necessarily sad--most with the disease eventually succumb to it, but the book ends on a hopeful and courageous note. If it had been around when I was a teenager, I would have wanted to read it.I'm glad it's around now that I'm an adult. I learned a lot.

This book is for EVERYONE involved with cystic fibrosis; not just teens.
Although the book goes under the heading of being a "The Ultimate Teen Guide," for teenagers with cystic fibrosis, I think that is much to confining a categorization.This is a book that EVERYONE involved with cystic fibrosis should read.Children probably should not read it until their teen years, but parents should read it long before their child reaches the teen years.Doctors and nurses should read it in their student years.Extended family members - grandparents, aunts and uncles - should read it so they really learn what cystic fibrosis is all about.I think parents of children with cystic fibrosis sort of insulate their families from knowing what cystic fibrosis is really about and this book explains it in a vividly accurate but extremely readable manner.Parents of children with cystic fibrosis would do well to buy more than one copy, wrap them up and give them to the rest of their family.I wish we had something like this when we needed it instead of just a few pamphlets and folders.

... Read more

Product Description
Since the discovery of the CF gene in 1989, scientists have learned a great deal about the biology of this disease which strikes one child in every 3,300 births. With the gene pinpointed, scientists are now working on ways to replace it and are developing better tests for earlier diagnosis. Understanding CF charts the progress that has been made in a disease whose symptoms can range from mild respiratory distress to life-threatening lung infections ... Read more

Customer Reviews (1)

A nice, concise account...
... and a handy reference for CF patients and their families. ... Read more

Product Description
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. ... Read more

Customer Reviews (1)

Wonderful educational book!
As a person with Cystic Fibrosis, I loved this book. The information about the disease is presented in a manner that makes it easy for anyone to easily understand. Being several years old, it may not have the most up-to-date info on research, but all the other information about the disease is very accurate and detailed. A MUST HAVE for any family that deals with this disease! ... Read more

Product Description
Introduces readers to the disease of cystic fibrosis, its causes, how it affects the body, and what it's like to live with the disease. ... Read more

Product Description

Why do racial and ethnic controversies become attached, as they often do, to discussions of modern genetics? How do theories about genetic difference become entangled with political debates about cultural and group differences in America? Such issues are a conspicuous part of the histories of three hereditary diseases: Tay-Sachs, commonly identified with Jewish Americans; cystic fibrosis, often labeled a "Caucasian" disease; and sickle cell disease, widely associated with African Americans.

In this captivating account, historians Keith Wailoo and Stephen Pemberton reveal how these diseases -- fraught with ethnic and racial meanings for many Americans -- became objects of biological fascination and crucibles of social debate. Peering behind the headlines of breakthrough treatments and coming cures, they tell a complex story: about different kinds of suffering and faith, about unequal access to the promises and perils of modern medicine, and about how Americans consume innovation and how they come to believe in, or resist, the notion of imminent medical breakthroughs.

With Tay-Sachs, cystic fibrosis, and sickle cell disease as a powerful backdrop, the authors provide a glimpse into a diverse America where racial ideologies, cultural politics, and conflicting beliefs about the power of genetics shape disparate health care expectations and experiences.

Customer Reviews (1)

A powerful testimony to the power of prejudice even in the field of medical research.
The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease provides a history of diseases which have been connected with racial makeup, sparking ethnic controversies in their discussion and analysis. The authors draw links between biology and social issues, examining underlying influences on research and perspective of modern medicine and how Americans ultimately come to embrace or reject projected breakthroughs. From therapy as social justice to media headlines and changing social perspectives, THE TROUBLED DREAM OF GENETIC MEDICINE is a powerful testimony to the power of prejudice even in the field of medical research.

Diane C. Donovan
California Bookwatch ... Read more

Product Description
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
An informative and thought-provoking new series that takes an in-depth look at common illnesses and disabilities. ... Read more

Product Description
Cystic Fibrosis (also known as CF, mucovoidosis, or mucoviscidosis) is a hereditary disease affecting the exocrine (mucus) glands of the lungs, liver, pancreas, and intestines, causing progressive disability due to multisystem failure. Abnormally thick mucus results in frequent lung infections. Diminished secretion of pancreatic enzymes is the main cause of poor growth, greasy stools, and deficiency in fat-soluble vitamins. Males can be infertile due to the condition congenital bilateral absence of the vas deferens. Often, symptoms of CF appear in infancy and childhood. Meconium ileus is a typical finding in new-born babies with CF. Individuals with CF can be diagnosed prior to birth by genetic testing. New-born screening tests are increasingly common and effective (although false positives may occur, and children need to be brought in for a sweat test to distinguish disease vs carrier status). The diagnosis of CF may be confirmed if high levels of salt are found during a sweat test, although some false positives may occur. There is no known cure for CF. This book presents important research in the field. ... Read more

Product Description
Cystic fibrosis used to be thought of as a respiratory and digestive disease, with a uniformly and rapidly fatal outcome. The spectrum of the disease has broadened into the mild atypical case, presenting in middle age, with the potential for complications in virtually every system of the body. In the past few years there has been an explosion of knowledge of the basic science of the defect. The editors have therefore invited the leading scientists and clinicians in the field of cystic fibrosis to describe the recent advances in this disease. Although there are many 'Recent Advances' texts, previous books have been selective in their choice of topics. This book is the first to cover the entire field of this complex disease, and encompasses the rapidly moving topics of the basic molecular and cellular biology as well as the recent multi-system, multi-disciplinary advances in the clinical care of patients.The authors have been charged with writing only about new developments and not to rehash old literature. The bulk of the references is therefore less than five years old.This book addresses all professionals who treat cystic fibrosis and want to have an update of new findings in the field, particularly of those outside their immediate specialisation. It will also be useful for basic researchers interested in related scientific areas and the clinical context of their work. ... Read more

Customer Reviews (1)

Digestable
A bit less reader-friendly than some other sources due to dry content, but has a wealth of information if you seek it out. ... Read more

Product Description

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.

Product Description
Cystic Fibrosis: Methods and Protocols consolidates cutting-edge in vitro, cellular, and whole animal laboratory protocols into an indispensable resource. From electrophysiology and cell biology, to animal models and gene therapy, this comprehensive set of methods provides the step-by-step instructions needed for investigators to incorporate new approaches into their 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 to determine how mutations subvert CFTR function, and in vivo protocols to examine how CFTR dysfunction produce multisystem pathology in both human and animal models. ... Read more