Breath from Salt

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

De: Bijal P. Trivedi

Narrado por: Deepti Gupta

Duración: 20 h y 35 m

Resumen del Editor

"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.

©2020 Bijal P. Trivedi (P)2020 Brilliance Publishing, Inc., all rights reserved.

Readable and clear explanation of cystic fibrosis

This book was a rare find. I met the author while sitting on a train during a 45-minute unscheduled stop. As we talked, she mentioned this book. As soon as she left the train, I downloaded it and started listening, and listening, and listening. I had a hard time putting it down. Ms, Trivedi clearly explains the cause of Cystic Fibrosis and its effects on a child. She chronicles the history, research, treatment, and cure for CF in a way that made me want to keep reading.

An amazing book on medical science breakthrough

What a terrific piece of work on the story of so many committed individuals who made a major medical breakthrough possible. I learned more on genetic medicine and drug discovery from this book than three years working in this area.

Loved it!

Part history, part personal interest, part science.

This book was recommended to me by my niece, who is pregnant with a baby who will be born with cystic fibrosis. We have no history of this disease in our family, nor does her husband. This diagnosis was a complete shock to both families.

When she told me about this book, I was so grateful it was on Audible!

I'm even more grateful now! The author is a brilliant storyteller and sleuth, but the narrator brings the book to life! She has a delightful hint of an accent, and perfect diction, pacing, inflection and pronunciation. I literally couldn't stop listening!

Finishing the book was important, so I am up to speed with the disease our newest family member will be living with. This author and narrator made enjoying the book easy to understand and finish!

If you are interested in medicine, genetic diseases, or medical history, listen to this book!!

Excellent research, chronology by Author Trivedi

Author Trivedi prepared excellent, chronological history and research and updates on CF and how CF impacted families. Her writings helped me know about CF, but also what is involved in the research for any disease and medications. The challenge was listening to the narrator, but I pushed through as I wanted to learn more. I would have preferred the author as the narrator.

Such a fantastic book!

I worked in a children’s hospital in the 1970’s so I was vaguely familiar with this disease. I am amazed at the author’s ability to interweave the personal stories with the scientific.., and that I was able to follow the course of research plus the financial issues. I was never lost in the science of the disease or advances nor in the vast cast of patients, parents, doctors, and researchers. Thank you for this well-told story.

Fantastic highly detailed overview of the discovery of Kalydeco, Trikafta and the drive to cure Cystic Fibrosis

Incredibly captivating. Having been involved with the CFF and meeting many of the individuals highlighted in this book, it was amazing to hear more about their personal stories, the challenges along the way and the persistence by so many. Eternally grateful for the progress made by all.

Cystic Fibrosis from A to Z

At more than 20 hours, this was an incredibly comprehensive book. It documents the incremental progress of scientific research, the dreadful suffering of the patients and families, the persistence and cleverness of the physicians and researchers, and the stamina and drive that turned the practice of fund-raising into a juggernaut. It's a lot to absorb.... but so worth it!

Sucks you in

Narration is clear and Breath from Salt brings you into the lives of children, parents, fundraisers, and researchers associated with the disease.

What it takes to get things done in medicine

My great-niece has Cystic Fibrosis. Her grandmother, my sister-in-law, lived to age 46 with it. In the short time since its discovery, CF has morphed from a sure death sentence to a manageable disease, and treatments improve every year. What this book does well is illustrate just how important speaking up is for any treatment to evolve for any disease. Research costs money. Pharmaceutical corporations are profit driven. If any progress is to be made in any disease, parents, donors, and volunteers need to be persistent and loud. Without the passion of a few scientists and a LOT of families, CF treatments would be decades behind where they are. There are other "orphan" diseases that will require the same tenacity to find better treatments and cures.
I was not a fan of this narrator, but the book was too compelling not to complete.

great account of what advocacy groups can achieve

I found this account fascinating, scientifically well researched, This is a hopeful example of how determined parent groups and relentless advocacy/fund raising moved science along to reach treatment of a very vile diseases. Very inspiring.