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

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“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.

From the Publisher

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Publisher ‏ : ‎ BenBella Books
Publication date ‏ : ‎ September 8, 2020
Language ‏ : ‎ English
Print length ‏ : ‎ 576 pages
ISBN-10 ‏ : ‎ 1948836378
ISBN-13 ‏ : ‎ 978-1948836371
Item Weight ‏ : ‎ 1.76 pounds
Dimensions ‏ : ‎ 6 x 2 x 9 inches
Best Sellers Rank: #173,201 in Books (See Top 100 in Books) #52 in Genetics (Books) #85 in History of Medicine (Books) #216 in Medical Professional Biographies
Customer Reviews: 4.8 4.8 out of 5 stars 379 ratings var dpAcrHasRegisteredArcLinkClickAction; P.when(‘A’, ‘ready’).execute(function(A) { if (dpAcrHasRegisteredArcLinkClickAction !== true) { dpAcrHasRegisteredArcLinkClickAction = true; A.declarative( ‘acrLink-click-metrics’, ‘click’, { “allowLinkDefault”: true }, function (event) { if (window.ue) { ue.count(“acrLinkClickCount”, (ue.count(“acrLinkClickCount”) || 0) + 1); } } ); } }); P.when(‘A’, ‘cf’).execute(function(A) { A.declarative(‘acrStarsLink-click-metrics’, ‘click’, { “allowLinkDefault” : true }, function(event){ if(window.ue) { ue.count(“acrStarsLinkWithPopoverClickCount”, (ue.count(“acrStarsLinkWithPopoverClickCount”) || 0) + 1); } }); });

9 reviews for Breath from Salt: A Deadly Genetic Disease, a New Era in Science, and the Patients and Families Who Changed Medicine Forever

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  1. Bookworm

    A Moving Epic
    From its opening pages, chronicling the story of a young couple struggling with the mysterious condition of their first child, Breath from Salt, moves and captivates. What follows is the heartbreaking record of a newly minted family that endures the cruelty of misdiagnoses; a mother’s well-founded suspicions of a grave illness, written off by pediatricians of the day as hysterical rantings; endless nights in hospital imbued with agonizing uncertainty. The author deftly weaves the family’s road to a clear diagnosis with the real-life detective story, decades earlier, of a trailblazing pathologist who first uncovered clues that an enigmatic affliction was actually a new beast — Cystic Fibrosis.Breath from Salt is a beautifully rendered human portrait of a community undaunted by the odds — relentless parents, a myriad of compassionate physicians and extraordinary scientists, philanthropists, that coalesce to form a visionary partnership, unified by a singular mission — to realize a cure. Along the way, we are bestowed a front row seat to the riveting drama of scientific discovery, where the highs and lows underscore stakes that are literally Life and Death. Chapters charged with suspense allow us to feel privy to one of the most significant milestones in medical genetics history. In 1989, when scientists Lap-Chee Tsui and Francis Collins and colleagues announce to the world they have identified the CF gene that causes the disease, it is as thrilling a victory as one can imagine. For someone who doesn’t know much about the scientific process behind drug discovery, subsequent chapters devoted to the vanguard developments in the field felt like an enthralling ride into the future of medicine, not just for those with CF, but for all.At the heart, this book pulses with compassion; the author invests her words with a brand of care and understanding that is a quality of all timeless work, and the lives engraved on these pages touched me deeply as a testament to the demonstrable power of hope. Breath from Salt looks and feels like a veritable classic.

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  2. Teresa Merchant

    The story of my life.
    I’m a 50 year old with CF so I’m slightly older than Joey would have been. I was very lucky to not have been as sick in my youth but have lost many, many friends over the years to CF, kids and young adults just like Joey. I have such sympathy and respect for the O’Donnells and their contribution to this project on every level.I was just lucky and have been able to benefit from every single thing you read about in this book: chest PT, mist tents, pancreatic enzymes, Tobi, pulmozyme, Trikafta. I was “lucky” enough to catch pneumonia when I was 10 weeks old and a routine sweat test revealed CF.And I was actually on the phase 2 and 3 clinical trials for Trikafta. And have been on so many other trials over the years thanks to the efforts of the Foundation.In fact, Gunyon Harrison, who gets a couple mentions, was my doctor in my youth. My current doctors are his proteges.This was like reading my autobiography. It gave me chills and I cried more than once. I was practically screaming at the pages that it took doctors 6 months to diagnose little Joey.Absolutely stunning in its depth and detail. Kudos all around, to the dedicated and tenacious author and everyone involved from the CFF, scientists, doctors to the parents and fund raisers.This book is worthy of an award and is a must read. But I’m probably biased.

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  3. Monique

    Well written, informative and easy to read despite the serious topic.
    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.

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  4. Edwige

    A must read
    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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  5. Jonathan D.

    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.

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  6. Bárbara Zuccolotto

    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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  7. Ravi patel

     

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  8. Amazon Customer

    (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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  9. MVS

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

    $27.69

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