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Cystic Fibrosis Books ReviewsCystic Fibrosis: A Guide for Patient and FamilyCystic Fibrosis: The Ultimate Teen Guide (It Happened to Me)Here the day-to-day dealings of life as a cystic fibrosis patient are described through a series of flashbacks to a time when the author was an 18-year-old volunteer at a cystic fibrosis overnight camp. From diagnosis to death, this book leaves no aspect of CF untold as it includes a description of the illness; a comprehensive discussion of who gets the disease and why; an explanation of the procedures involved in diagnosing the disease; coverage of the arduous daily therapies involved in maintaining the life of a person with cystic fibrosis; and, now that people who have CF are living longer because of available therapies, the new challenges of dealing with CF-related diabetes as well as making decisions regarding lung transplants are all covered. Understanding Cystic FibrosisThis book is quite an easy introduction to cystic fibrosis and a good reference for people with CF or their families. It’s a concise read, but it is the perfect companion, if understanding and strength are the things you are seeking. 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 Cystic Fibrosis" charts the progress that has been made in a disease whose symptoms can range from mild respiratory distress to life-threatening lung infections. A useful guide for families and patients. With Every Breath: Stories by and about People Living with Cystic FibrosisCystic fibrosis is 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 cure cystic fibrosis. David's Promise: A Young Man's Struggle with Cystic FibrosisWhat would it be like to navigate this life under the shadow of a deadly disease? How would you cope, both physically and psychologically? Approximately 30,000 people in our country live with the devastating illness, cystic fibrosis, and one in twenty Caucasians are carriers of its gene. Many among us are affected by CF, but few really know much about it. "David's Promise" delivers an in-depth examination of a young man's life-long confrontation with cystic fibrosis. Through the fictional main character of David, the reader is given a deeply personal chance to experience love's ultimate triumph over illness. The story explores all the complexities of David's life, and as each layer unfolds, the reader begins to look beyond David's medical diagnosis and into his heart. The young man is a teacher with a pregnant wife and a whole slew of struggles, including the implications of genetic testing, the question of abortion, and denial of medical insurance coverage in this country. This novel does not pull any punches concerning the stark realities of cystic fibrosis, yet it was written to offer hope and understanding about an often hopeless and misunderstood disease. Breathing for a Living: A MemoirIt would be easy to assume that the story of Elizabeth Rothenberg's battle with cystic fibrosis is one of a brave young woman staying constantly positive in the face of tremendous adversity. But situations such as hers are rarely that simple. Thankfully, the portrait that emerges in her memoir, "Breathing for a Living", is that of a complex and very real human being who experiences joy, anger, despair, and hopefulness while struggling to live the kind of normal life most of her fellow college students take for granted. And while her candor is admirable, what makes Rothenberg a remarkable author is her dedication to just getting words written down on the page at times when many would simply retreat from the world. Through an agonized process of waiting for a lung transplant, she writes down exactly what she's feeling. She writes extensively as her body fights the disease and struggles to accept the new lungs. And as she is shuttled back and forth between her New York home, her academic career at Brown, and numerous emergency hospital stays, she keeps on writing. Diagnosed with cystic fibrosis at three days old, Rothenberg spent much of her life in and out of hospital rooms so her medical knowledge is extensive and well documented. One gets the impression that staying on top of this information helped her feel at least somewhat in control of her own situation and it lends a steady gravity to her emotionally charged memoir. The book is a pastiche of e-mails to friends, journal entries, and the occasional snapshot. It looks very much like a college kid's scrapbook, which, in many ways, it is. Rothenberg’s energetic prose is highly informal and probably more guileless than one would see from a more seasoned writer. But that intimacy and simplicity adds to the charm and, as Rothenberg's health deteriorates, the heartbreak as well. By the end of "Breathing for a Living", the reader loses a friend but, gains a greater appreciation of what it means to live. -- John Moe, Amazon Review The Spirit of Lo : An Ordinary Family's Extraordinary JourneyThe book is an honest, open sharing, infused with a spirit of overcoming the odds, one day at a time. -- The Tulsa World, October 29, 2000 This book shows us that through love and support, we can find contentment, even happiness, in spite of life’s adversities. -- Tulsa Kids, October 2000 |
 News About Cystic Fibrosis BooksMay is recognized as Cystic Fibrosis Awareness month, and News 9's own Stan Miller joined the Cystic Fibrosis Foundation in their quest to find a cure. Winter, Beattie add to charity race day?s kitty 3 May 2012 at 11:39am LOCAL trainer Leighton Winter and Tim Beattie played their part in yesterday?s Cystic Fibrosis race day at Dawson Park when Boomtime and Wise Head won their races wearing the No.1 red rug. Nonprofit News: Highlighting Jacksonville?s Philanthropic Community 15 May 2012 at 8:44am As our community continues to face a tight economy and shrinking budgets, the Daily Record has established this feature that each week reports the efforts of local nonprofit organizations and the individuals and businesses that support them. Beckham: Petty crime turned tragedy 3 May 2012 at 1:05am Thieves stole far more than a nylon messenger bag full of papers, bills, a personal journal, an iPad, an iPod touch and an Android T-Mobile cell phone when they broke into a car on Route 1 last Monday night, Beverly Beckham writes. Olivia's plight stirs Malvern mum to finish Ironman 17 Apr 2012 at 2:07am "THERE are not many people in the world like Stella Barber." Rett Syndrome Girls Lose Speech and Hands, But Not Hope 8 May 2012 at 5:40pm Rare Genetic Disorder Shuts Off Motor Skills, Not Mental Acuity. Community Calendar 16 May 2012 at 12:37pm Listings are published as space allows each week. E-mail listings to cp.calendar@sunmedia.ca. Deadline for inclusion in Thursday's paper is Monday at 9 a.m. May 17 Norwood & District Horticultural Society ? Annual spring garden and plant sale.[...] Ulysses woman chronicles daughter's struggles 4 May 2012 at 10:10pm Many people dream of writing a book. There also are some who would think that writing a book about a disorder that has left Beth Damon wheelchair bound, would be depressing. To Good to Miss 5 May 2012 at 9:11pm A look at what's happening about the city Hope And Normalcy At The Hospital School ? North Carolina Public Radio WUNC 18 Apr 2012 at 3:01am Eric Hodge : Among the vast, winding hallways inside the UNC Hospital complex, there?s a school. It's small, by public school standards, but it serves a vital purpose.
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The Risk For Being A Carrier For Cystic Fibrosis
... disease and search for specialists or clinics in your area. Education is power. The more you know about this disease, the better you will be in handling the treatment. Cystic fibrosis is not curable, and any tests taken on embryos will not be able to discover how severe the symptoms will be for that child. ...
What Are Your Options For Treating Cystic Fibrosis
... several nutrient supplements on the market in pleasant tasting shake forms. Each cystic fibrosis patient should do exercise as their body can tolerate it. Physical exercise will help keep the thickened mucus from building up in the body. It also allows the mucus to be removed much easier. Physical exercise ...
... mucus build up in the lungs and respiratory organs. This mucus is a normal substance found in every person but in patients with cystic fibrosis it becomes abnormally thick and sticky. It sticks to the lining of the passageways that go to the lungs and digestive tracts and disrupts the work of those organs. ...
Cystic Fibrosis After The Diagnosis
... both parents are carriers there is a 25 percent chance one of their children will be born with cystic fibrosis. There is a 50 percent chance one or more of their children will be carriers, and a 25 percent chance the child will not be diagnosed with cystic fibrosis. Cystic fibrosis affects over 30,000 ...
The Spiritual Side Of Cystic Fibrosis Treatment
... ease the stress a cystic fibrosis patient feels. Your personal God can help you relieve stress and help you deal with cystic fibrosis. Meditation and prayer will relax your body. When your body relaxes the major organs the disease affects will also react by relaxing. Yoga and prayer will slow your body ...