CF Book Review: Breath From Salt
If you have CF, have a loved one with CF, or are just interested in science or the business model of disease non-profits, Breath from Salt: A Deadly Genetic Disease, a New Era in Science, and the Patients and Families Who Changed Medicine Forever by Bijal P. Trevedi won’t disappoint you. Praised by Bill Gates himself, it’s an inspiring book about the families and community leaders who fought passionately to bring about revolutionary treatments for CF through creative and risky "venture philanthropy."
It’s a deeply personal book that had me crying at every chapter and left me feeling proud to have CF. I highly recommend you add it to your reading or book club list!
Summary of Breath From Salt
Breath From Salt details the history and business of cystic fibrosis over the last century, including its powerful transformation from a deadly mystery diagnosis through the discovery of the CF gene to the era of highly effective genetic treatments. The author begins by introducing passionate and business-minded Joe O’Donnell and his family whose son ultimately passed from CF in 1986. Joe is one of the many passionate players who worked tirelessly to raise millions of dollars with other parents in a grassroots operation which would ultimately become the Cystic Fibrosis Foundation. Together with patients, families, philanthropists, and dedicated scientists, they sought out to do the impossible: give children with a rare and underfunded deadly disease a fighting chance.
Joe’s story is woven throughout the chapters even after the passing of his son as CF makes headlines again and again--breaking scientific barriers and setting the stage for what a unique community and small disease non-profit can do.
Trevedi leaves no detail of cystic fibrosis history untouched with her detailed accounts and interviews with the CF community. Beginning with the discovery of CF by Dr. Dorothy Anderson, creation of CF Centers and comprehensive treatment plans in the 1960s, mapping of CF gene, first FDA CF-specific medications, to the astonishing decades-long development and creation of CFTR modulators such a Trikafta. It is a book jam-packed with a wealth of information, history, and hope every person living with CF should be aware of.
This is arguably the best and most detailed account I have read about the history and transformation of cystic fibrosis. The author manages to give the reader a complete picture of how far we have come as a community within the last century. The interviews with community members, diagrams and sketches, and explanations of complex scientific concepts were well done.
I loved the familiarity of at one point reading about the CF center I attend, clinical trials I have participated in, and the difficult and triumphant emotions of the challenges and joys of CF we all share. This book felt like home and helped me understand how and where I "came" from, as well as the dedicated people who helped along the way.
Even knowing how the book would end with the approval of Trikafta, I was caught up in the triumph and emotion of the discovery. It is truly an emotional rollercoaster to read but so hopeful as a person living with CF to see just how far we have come and how much we have left to achieve.
Possible trigger warning
Although the book in its entirety is hopeful and inspirational, for some families who are at the start of their journeys with CF, it may be difficult to read the beginning of the book. In the beginning, the author details the history and personal stories of the families from the 1960s whose children battled CF. Because of the lack of information and treatment options, their stories are heart-wrenching and filled with loss and desperation. I had a difficult time reading about how sick the patients were and the many emotions of the families who desperately needed answers and treatment options. In the end, it made me very grateful to the individuals who came before me, lending to the treatments and discoveries that resulted from their experience.
Have you read Breath From Salt by Bijal P. Trevedi? Share your thoughts about the book with our community below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?