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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.
- Sales Rank: #1831597 in Books
- Published on: 2006-04-17
- Original language: English
- Number of items: 1
- Dimensions: 10.35" h x .92" w x 7.37" l, 1.70 pounds
- Binding: Hardcover
- 280 pages
From School Library Journal
Grade 9 Up–A solid introduction to the disease–the facts, the challenges, the complications, and the outlook for the future. A plethora of personal stories accompanies each chapter. The book opens with the author's account of going to CF camp for several years, the friends she made there, and the ones she lost. Each chapter has a small black-and-white photograph of her fellow campers. An anecdote about something that happened at camp follows the picture; it is italicized and in small print, making it difficult to read. Interspersed throughout the text are geometrical boxes with additional facts. Famous people who have the disease or who have a child, parent, or friend with it are mentioned. Large caption boxes are filled with quotes or poignant poems written by CF patients, and eye-opening statistics appear throughout. Notes follow each chapter. The afterword tells of the individuals mentioned in the book who accomplished something they never expected to live long enough to do, while others tell of the deaths of some of the teens introduced. Young adults with the disease will feel a part of a worldwide community after reading this book. There is optimism as well as sadness here, but most of all there is the resonance of CF sufferers' voices telling others, You are not alone.–Marilyn Fairbanks, Azure IRC, Brockton High School, MA
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.
Review
A solid introduction to the disease...A plethora of stories accompanies each chapter....Young adults with the disease will feel a part of a worldwide community after reading this book. There is optimism as well as sadness here, but most of all there is the resonance of CF sufferers' voices telling others, 'You are not alone.' (School Library Journal, 10/1/2006)
...this great resource gives extensive medical and technical information as well as profound insight in the disease's human impact....this entry offers excellent research information for patients, families, and students. Its additional pages, however, provide even greater depth. Gripping personal accounts will pull in readers, teenage and adult, who are not familiar with the disease. (VOYA)
About the Author
Melanie Ann Apel began writing about CF in 1995 and has since published more than 40 non-fiction books for children and young adults. She worked as a pediatric respiratory therapist at Children's Memorial Hospital in Chicago for six years.
Most helpful customer reviews
8 of 8 people found the following review helpful.
For Those Who Need To Know
By Carol L. Koeller
Cystic fibrosis is much 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. Her point 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 the target audience, too--it's direct and doesn't sidestep issues, there are lots of real-life stories, and when she explains the science end of things she doesn't talk 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.
5 of 5 people found the following review helpful.
This book is for EVERYONE involved with cystic fibrosis; not just teens.
By Samuel W. Feinstein
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.
2 of 2 people found the following review helpful.
Family members needing educating
By Sandra Mcmahon
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.
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