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Breath from Salt: A Deadly Genetic Disease, a New Era in Science, and the Patients and Families Who Changed Medicine Forever Hardcover – September 8, 2020

by Bijal P. Trivedi (Author)
4.8 4.8 out of 5 stars 355 ratings
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Recommended by Bill Gates and included in GatesNotes

"Elaborating on the science as well as the business behind the fight against cystic fibrosis, Trivedi captures the emotions of the families, doctors, and scientists involved in the clinical trials and their 'weeping with joy' as new drugs are approved, and shows how cystic fibrosis, once a 'death sentence,' became, for many, a manageable condition. This is a rewarding and challenging work."

—Publishers Weekly


Cystic fibrosis was once a mysterious disease that killed infants and children. Now it could be the key to healing millions with genetic diseases of every type—from Alzheimer's and Parkinson's to diabetes and sickle cell anemia.

In 1974, Joey O'Donnell was born with strange symptoms. His insatiable appetite, incessant vomiting, and a relentless cough—which shook his tiny, fragile body and made it difficult to draw breath—confounded doctors and caused his parents agonizing, sleepless nights. After six sickly months, his salty skin provided the critical clue: he was one of thousands of Americans with cystic fibrosis, an inherited lung disorder that would most likely kill him before his first birthday.

The gene and mutation responsible for CF were found in 1989—discoveries that promised to lead to a cure for kids like Joey. But treatments unexpectedly failed and CF was deemed incurable. It was only after the Cystic Fibrosis Foundation, a grassroots organization founded by parents, formed an unprecedented partnership with a fledgling biotech company that transformative leaps in drug development were harnessed to produce groundbreaking new treatments: pills that could fix the crippled protein at the root of this deadly disease.

From science writer Bijal P. Trivedi, Breath from Salt chronicles the riveting saga of cystic fibrosis, from its ancient origins to its identification in the dank autopsy room of a hospital basement, and from the CF gene's celebrated status as one of the first human disease genes ever discovered to the groundbreaking targeted genetic therapies that now promise to cure it.

Told from the perspectives of the patients, families, physicians, scientists, and philanthropists fighting on the front lines, Breath from Salt is a remarkable story of unlikely scientific and medical firsts, of setbacks and successes, and of people who refused to give up hope—and a fascinating peek into the future of genetics and medicine.
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  1. Print length
    576 pages
  2. Language
    English
  3. Publisher
    BenBella Books
  4. Publication date
    September 8, 2020
  5. Dimensions
    6.25 x 1.75 x 9.31 inches
  6. ISBN-10
    1948836378
  7. ISBN-13
    978-1948836371
  8. See all details
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Editorial Reviews

Review

"I couldn't put the book down."

—Bill Gates

“A thorough and engrossing saga packed with information, Breath from Salt is really about the transformative power of hope. It arrives at just the right moment, when too many of us have forgotten what human faith, ingenuity, and relentless determination can accomplish.” 

—Dan Fagin, author of the Pulitzer Prize–winning Toms River

“Beautifully written, Breath from Salt brings to life the amazing story of a passionate community that dared to dream, work together, and take extraordinary risks to bring life-saving treatments to those with cystic fibrosis. Timely and important, the breakthroughs described in this book are likely to accelerate cures for many other genetic diseases.”

—Dr. Preston W. Campbell, former president and CEO of the Cystic Fibrosis Foundation

About the Author

Bijal P. Trivedi is an award-winning freelance writer specializing in medicine and health. Her work has taken her from the hidden vaults of New York's Metropolitan Museum of Art to the Serengeti Plains to Moscow's Star City, where she blasted off with space tourism entrepreneurs on the "Vomit Comet" for astronaut training. Her work has appeared in Discover, Scientific American, New Scientist, Wired, The Economist, National Geographic, Science, Self, Nature, among others. Her feature "The Wipeout Gene" was anthologized in The Best American Science and Nature Writing: 2012. Trivedi is the former editor of the NIH Director's Blog, which shares compelling, cutting edge biomedical research with the general public. Trivedi also worked as a writer and editor for the National Geographic News Service, a wire service she helped launch in partnership with the New York Times Syndicate.

Product details

  • Publisher ‏ : ‎ BenBella Books (September 8, 2020)
  • Language ‏ : ‎ English
  • Hardcover ‏ : ‎ 576 pages
  • ISBN-10 ‏ : ‎ 1948836378
  • ISBN-13 ‏ : ‎ 978-1948836371
  • Item Weight ‏ : ‎ 1.76 pounds
  • Dimensions ‏ : ‎ 6.25 x 1.75 x 9.31 inches
  • Customer Reviews:
    4.8 4.8 out of 5 stars 355 ratings

About the author

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Bijal P. Trivedi

Bijal P. Trivedi

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Bijal P. Trivedi is an award-winning freelance journalist specializing in longform narrative features about biology, medicine, and health. She currently works as a science and technology editor for The Conversation. She has just completed her first book, Breath from Salt: A Deadly Genetic Disease, a New Era in Science, and the Patients and Families Who Changed Medicine Forever.

​

Trivedi’s writing has been featured in The Best American Science and Nature Writing 2012, National Geographic, Scientific American, Wired, Science, Nature, The Economist, Discover, and New Scientist. Her work has taken her from the Mexico-Guatemala border where she covered the use of genetically modified mosquitoes for fighting the dengue virus to the behind the scenes at Massachusetts General Hospital where she watched trauma surgeons test hypothermia to save pigs with life-threatening injuries to Moscow’s Star City where she blasted off with space tourism entrepreneurs on the “Vomit Comet” for astronaut training. She also edited the NIH Director’s Blog and, prior to that, helped launch the National Geographic News Service in partnership with the New York Times Syndicate, which she wrote for and edited. Her undergraduate fascination with biochemistry and molecular biology at Oberlin College compelled her to pursue a master’s degree in molecular/ cell/developmental biology at UCLA. Her love of writing drew her to journalism rather than to a lab bench—and to a second master’s degree in science journalism from New York University.

​

Trivedi has focused on long-form feature stories on complex scientific topics from genetic testing and art authentication to the carbon footprint of our diet and genetically modified mosquitoes. Her New Scientist story “Slimming for Slackers” won the 2006 Wistar Institute Science Journalism Award. “Life on Hold,” also written for New Scientist, won the 2005-2006 Michael E. DeBakey Journalism Award. “The Rembrandt Code,” published in Wired, was tagged “Outstanding story on any subject: Print” by the South Asian Journalists Association. Trivedi co-authored “A Guide To Your Genome” that won the 2009 National Institutes of Health “Gold” Plain Language Award. Most recently, her feature “The Wipeout Gene” was selected for the The Best American Science and Nature Writing: 2012.

Trivedi taught in New York University’s graduate Science, Health and Environmental Reporting Program from 2007-2012.

Trivedi has lived in the UK and Australia, and is now based in Washington, DC.

Customer reviews

4.8 out of 5 stars
4.8 out of 5
355 global ratings
"Breath from Salt"...the power of caring parents, venture philanthropy and curing diseases.
5 Stars
"Breath from Salt"...the power of caring parents, venture philanthropy and curing diseases.
As a "cf Dad”, professionally engrossed in the biopharmaceutical world for the last 20 years I can say, without a doubt, that Bijal Trivedi's "Breath from Salt", is a must read for those employed in the biopharma industry, cystic fibrosis community, or anyone with interest in the modern miracles of science, rare diseases and the power of venture philanthropy.Bijal's writing is masterful as she compassionately intertwines the discovery, history and heartbreak of a cystic fibrosis diagnosis and the challenging life associated with living with cf in juxtaposition to the cf scientific breakthroughs that have occurred over the last 50+ years, most notably the Vertex Pharmaceutical therapy, Trikafta, (which corrects the underlying cause of cf for nearly 90% of the cystic community, some 30,000 people in the US alone). Trikafta is true a game changer.Perhaps what makes Bijals book most special is the way she simplifies challenging cf science jargon for the reader in concert with sharing intimate and heartbreaking, yet motivating, stories cf amazing cf parents like Joe & Kathy O’Donnell who sadly lost their son Joey to cf many years ago yet it never stopped them for finding ways to make a difference for other people with cf and the passionate, creative and bright leadership at the Cystic Fibrosis Foundation and Vertex Pharmaceuticals. My gratefulness to the CFF and Vertex has no end.
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Top reviews from the United States

Edwige Griffith
5.0 out of 5 stars A must read
Reviewed in the United States on August 11, 2021
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The cystic fibrosis foundation story is unique and has given hope to so many. We are among the lucky ones. Our son was diagnosed with CF 15 years ago and he has been lucky enough to be on many of the drugs developed by CFF. We have been involved with CFF since day one, and we have heard many stories and have been very grateful for all the people who came before us and made it all happen. But I still learned quite a bit and this book really put everything in perspective. I am not into science so some part were a bit much for me (but my husband loved it all!). Most of all, I am so thankful for Dr. Beall, for his genius, his vision and his perseverance, and also the O’Donnell family for not giving up and raising millions of $$ so progress could be made. They are the key players and we are more than lucky and grateful they never gave up.
Very well written and captivating book. A story of hope.
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Monique
5.0 out of 5 stars Well written, informative and easy to read despite the serious topic.
Reviewed in the United States on November 6, 2020
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The year 2020 has had a lot of firsts for me and one of the things on my list is the number of non-fiction books I’ve read. I didn’t expect to enjoy this book as much as I did. I wanted to keep reading and was not bored. There was a lot of technical jargon and so many names I kept forgetting but despite the topic, the writing style makes it immensely readable. It felt like fiction though everything is pure fact. And I learnt so much from the book. About Cystic Fibrosis, a disease I knew nothing about, but also how scientists, doctors, government, pharmaceutical companies, everyone works together to find cures, fund raise, stay relevant. The number of times I had tears in my eyes, of sadness and happiness. The book resonated on so many levels. I identified with the work of my paediatrician and research scientist friends. I think this book needs to be read. It does not have to be finished cover to cover at one go. Its written so you can dip into it and still make sense of it. Awesome job by the writer and what an ode to the hard work and patience of so many people.
15 people found this helpful
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Robert J. Beall, Ph.D.
5.0 out of 5 stars The Story of a Medical Miracle
Reviewed in the United States on September 11, 2020
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"Sixty-five years ago, most children born with cystic fibrosis died before nursery school. Then... a community of parents, patients, volunteers, physicians, researchers and philanthropists worked tirelessly for years to develop drugs which now enable many people with cystic fibrosis to lead healthier lives. This success has been one of the “medical miracles” of the 21st century. Bijal Trivedi demonstrates her exceptional narrative skills as she interweaves the exciting scientific story of drug development and the human story of the experiences of patients, families and caregivers.

“Breath from Salt” is a compelling story because it demonstrates how a disease-related organization - the Cystic Fibrosis Foundation - changed the course of a life-threatening disease. Hopefully, the “journey” described in this book will be a model for the development of more effective treatments for other diseases in the future. " Robert J. Beall, Ph.D. Former President and CEO of the Cystic Fibrosis Foundation; Bethesda, MD
39 people found this helpful
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Dinger
4.0 out of 5 stars CF diagnosis and treatment then and now
Reviewed in the United States on February 14, 2021
I read this book in a week, and re-reading it now. Having seen my first cystic fibrosis (CF) patient in 1978, I have since been fascinated with the progress of medical care over time, in part spurred by the parents, caregivers, and physicians of kids with CF. The book takes great care in its detail and first person accounts of patients, family members, and caregivers as they looked for treatments and procedures that would help digestion, growth, and secretion clearance. The progress made, especially the hard work and support of the Cystic Fibrosis Foundation (CFF) is nothing short of miraculous. I strongly recommend this book to anyone who wants to know more about inherited diseases like CF, and it should be required reading for those who wish to work in pulmonary med, endocrinology, respiratory therapy, and pediatrics. My disappointment on the complete lack of mention of the role of respiratory therapists not withstanding, I think outside of Orenstein's series on CF patient and family care, this author gave practitioners a definitive inside look at what good things have been accomplished by the CFF, and what advances can be made with expertise, intuition, imagination, and proper funding.
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Top reviews from other countries

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Bárbara Zuccolotto
5.0 out of 5 stars Comovente.
Reviewed in Brazil on February 16, 2023
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 Livro muito informativo e ao mesmo tempo nos prende. A escrita é sensível e com características psicológicas dos personagens. Ficamos presos as histórias e às pessoas. Indico para todos que tem interesse em aprender sobre a FC e sobre doenças raras! ❤️😊
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Bárbara Zuccolotto
5.0 out of 5 stars Comovente.
Reviewed in Brazil on February 16, 2023
Livro muito informativo e ao mesmo tempo nos prende. A escrita é sensível e com características psicológicas dos personagens. Ficamos presos as histórias e às pessoas. Indico para todos que tem interesse em aprender sobre a FC e sobre doenças raras! ❤️😊
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Rohan T
5.0 out of 5 stars An exceptional narrative for the times we live in
Reviewed in Canada on October 28, 2020
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If you have enjoyed the science and medical writing of Siddhartha Mukherjee, Atul Gawande, Richard Preston, or Carl Zimmer, you will love this book. It is a transfixing narrative that beautifully balances the complex natures of hope and desperation, success and failure, individual efforts and collective action. It is both a page-turner and a head-scratcher with a lovely cadence. It is educational without being dry. Enormous care and thought has been put into this important story.

What is perhaps more important to note is that this is a fantastic read for the age that we live in. In a year where nothing has gone right, where fear runs high, and where uncertainty is everywhere, this is the story of cooperation, partnership, symbiosis, and ultimately, progress. As a foreigner looking in on America, this book brings to light the features of the US that have made it an enduring and successful country - curiosity, innovation, charity and goodwill, and an aspiration to solve great problems with lasting solutions. In the days before and after the election, this will make great reading if only to refocus on what humans are capable of achieving, with and for one another, in the presence of a higher calling.
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Amazon Customer
5.0 out of 5 stars Inspiring
Reviewed in Germany on July 28, 2021
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(Eng)
The book is amazingly written. It's a complete history of the disease and the development of a cure. Trivedi nicely combines scientific knowledge, the history of every achievement of the CF community with the incredible personal stories of the O'Donnell family and others.

(GER)
Das Buch ist erstaunlich gut geschrieben. Es ist eine vollständige Geschichte der Krankheit und der Entwicklung eines Medikaments. Trivedi verbindet wissenschaftliche Erkenntnisse, die Geschichte aller Errungenschaften der Mukoviszidose-Gemeinschaft und die unglaublichen persönlichen Geschichten der Familie O'Donnell und anderer.
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MVS
5.0 out of 5 stars Very Enjoyable if you have a special interest!
Reviewed in Sweden on May 5, 2021
Verified Purchase
I couldn’t put it down. As a CF patient and member of the biotech industry, I found this book is a very well written account of how the suffering of the patients can turn into innovation when the right people are involved.
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Jonathan D.
5.0 out of 5 stars Fascinating, compelling and sobering
Reviewed in the United Kingdom on January 29, 2021
Verified Purchase
This book is both well researched and tenderly written.
The author weaves three stories in one. Firstly, a scientific history of a genetic disease and the people who have made great progress in our understanding of it.
Secondly, a fairly comprehensive guide as to how complicated it is to run a charity.
And thirdly, a warmly compassionate story of the lives of families affected by the condition.
All this whilst still managing to make it a compelling 'can't-put-it-down' page-turner.
One person found this helpful
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