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Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them Kindle Edition

4.5 out of 5 stars 257 ratings

"[Kolata] is a gifted storyteller. Her account of the Baxleys... is both engrossing and distressing... Kolata's book raises crucial questions about knowledge that can be both vital and fatal, both pallative and dangerous." —Andrew Solomon, The New York Review of Books

New York Times
science reporter Gina Kolata follows a family through genetic illness and one courageous daughter who decides her fate shall no longer be decided by a genetic flaw.

The phone rings. The doctor from California is on the line. “Are you ready Amanda?” The two people Amanda Baxley loves the most had begged her not to be tested—at least, not now. But she had to find out.

If your family carried a mutated gene that foretold a brutal illness and you were offered the chance to find out if you’d inherited it, would you do it? Would you walk toward the problem, bravely accepting whatever answer came your way? Or would you avoid the potential bad news as long as possible?

In
Mercies in Disguise, acclaimed New York Times science reporter and bestselling author Gina Kolata tells the story of the Baxleys, an almost archetypal family in a small town in South Carolina. A proud and determined clan, many of them doctors, they are struck one by one with an inscrutable illness. They finally discover the cause of the disease after a remarkable sequence of events that many saw as providential. Meanwhile, science, progressing for a half a century along a parallel track, had handed the Baxleys a resolution—not a cure, but a blood test that would reveal who had the gene for the disease and who did not. And science would offer another dilemma—fertility specialists had created a way to spare the children through an expensive process.

A work of narrative nonfiction,
Mercies in Disguise is the story of a family that took matters into its own hands when the medical world abandoned them. It’s a story of a family that had to deal with unspeakable tragedy and yet did not allow it to tear them apart. And it is the story of a young woman—Amanda Baxley—who faced the future head on, determined to find a way to disrupt her family’s destiny.


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Editorial Reviews

Review

"[Kolata's] book recalls two other classic tales of medical anthropology, Rebecca Skloot’s The Immortal Life of Henrietta Lacks and Anne Fadiman’s The Spirit Catches You and You Fall Down.” ―The Washington Post

"...a moving, suspenseful page-turner that's likely to become a classic of medical storytelling." ―
The Washington Post

"
Mercies in Disguise is the true story of one family’s struggle with a rare and deadly inherited illness. Gina Kolata’s prose brings to life the science as well as the maverick scientists who solve the riddle. When a blood test can now predict who is destined to be an invalid while still young, and who is spared, we agonize with family members over whether we’d want such knowledge. Mercies in Disguise reads like a medical thriller; I simply couldn’t stop once I began.―Dr. Abraham Verghese, author of the New York Times bestseller Cutting for Stone

"
Mercies in Disguise is an extraordinary medical mystery, scientific history and, above all, human drama. Once I started reading, I couldn't stop. Then, when I finished it, I couldn't stop thinking about the Baxleys and the choices they faced." ―Sylvia Nasar, author of A Beautiful Mind, winner of the National Book Critics Circle Award for Biography

"Absorbing... the interweaving tales of science, family, and medical ethics make for a compelling read." ―
Library Journal

"Gripping...Kolata's book reads like a medical thriller." ―
Publishers Weekly

"A story that pits hope against fate, courage against uncertainty... Kolata delivers an inspiring chronicle of a remarkable family, medical advances, and redefining destiny." ―
Booklist

About the Author

Gina Kolata is a senior writer who covers medicine for the New York Times. She is also the author of a number of books, including Ultimate Fitness and the national bestseller Flu.  She lives in Princeton, New Jersey.

Product details

  • ASIN ‏ : ‎ B01L7BMGH0
  • Publisher ‏ : ‎ St. Martin's Press; 1st edition (March 21, 2017)
  • Publication date ‏ : ‎ March 21, 2017
  • Language ‏ : ‎ English
  • File size ‏ : ‎ 3.6 MB
  • Text-to-Speech ‏ : ‎ Enabled
  • Screen Reader ‏ : ‎ Supported
  • Enhanced typesetting ‏ : ‎ Enabled
  • X-Ray ‏ : ‎ Enabled
  • Word Wise ‏ : ‎ Enabled
  • Print length ‏ : ‎ 283 pages
  • Customer Reviews:
    4.5 out of 5 stars 257 ratings

About the author

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Gina Kolata
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I’m a senior medical writer for the New York Times and the author of nine books and editor of three. I’ve given talks across the nation and in Europe and Asia and taught a science writing seminar at Princeton University. I have been on just about every major news and radio show including the morning news shows, Sixty Minutes, Charlie Rose, Steven Colbert, Fresh Air and most other NPR talk shows. I have won numerous prizes and was a Pulitzer finalist twice. And, strangely enough, I am also a Kentucky Colonel, like Colonel Sanders. But all that sounds like a resume, and what really matters of course is who am I and what motivates me and what do I care about? I like to think I am much more than my job, although my Times work is one of my passions. I have an incredible family and wonderful friends that I cherish. I love distance running – I’ve run five marathons – and road cycling. I knit and I cook. I love the ocean and cannot go through a summer without spending time at the beach. But my favorite seasons are summer and fall. I know, you think the next thing I will tell you is that I like pina coladas and walking in the rain. Actually, those are two things I do not like. But what I do like, what I turn to for sheer pleasure, is literary fiction. And when I decide to write a book, I latch onto the story. My books are meant to engage you, as they engage me. I want you to care about the narrative and the characters as much as I do. I want them to be page turners, but true, absolutely factual. And I want them to be rich with ethical and social issues so that you come away haunted by what you have just read.

Customer reviews

4.5 out of 5 stars
257 global ratings

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Customers say

Customers find this book to be a touching true story that is well written and easy to comprehend. They describe it as an emotional read, with one customer noting how the author takes real guts to share their experience. The book receives positive feedback for its readability, with one customer mentioning it's a quick read. Customers express concern about the severity of the disease described in the book.

AI-generated from the text of customer reviews

15 customers mention "Story quality"15 positive0 negative

Customers find the book's story quality positive, describing it as a touching true tale that is an emotional read. One customer notes how the author skillfully weaves the narrative.

"...It was an emotional read for me, as I went through the testing like those in the book, and I could completely relate to their feelings and..." Read more

"...This book provided the scientific background as well as the human interest story of a family who had to endure it." Read more

"...It is an incredibly personal and honest look into a family's life dealing with a devastating and terminal hereditary disease that few doctors know..." Read more

"...This is an inspirational story about normal people, who when faced with a horrible fate showed that they could rise above it and show us what..." Read more

13 customers mention "Readability"13 positive0 negative

Customers find the book readable and interesting, with one mentioning it's a quick read.

"Great read! My brother told our family about this book and I bought it and read it in a few hours...." Read more

"This is a fascinating book, but the title and subtitle are misleading...." Read more

"...Loved the book because I have a personal interest in prion diseases and wanted to learn more...." Read more

"If I could rate this book a 10, I would. This is honestly the best book I have read in quite sometime...." Read more

6 customers mention "Writing quality"6 positive0 negative

Customers praise the writing quality of the book, finding it well written and easy to comprehend, with one customer noting how it provides scientific background.

"...This book provided the scientific background as well as the human interest story of a family who had to endure it." Read more

"...story of courage and resilience told masterfully by an incredibly gifted writer with great insight into the human condition...." Read more

"...Well written and intentional in content. It made me thankful my children do not have to have their lives suspended like Amanda's family does." Read more

"Excellent! Well written, easy to comprehend despite all the technical jargon, and enormously human...." Read more

3 customers mention "Disease severity"0 positive3 negative

Customers express concern about the disease severity in the book, with one describing it as horrible and another noting how it destroys the body.

"...There is no mercy in the inherited illness that runs through a family, and there is no rescue or cure in sight...." Read more

"The story of the family is heart wrenching. The disease destroys the body and robs a family of one of its members...." Read more

"A fantastic telling of a horrible story and a horrible disease...." Read more

Top reviews from the United States

  • Reviewed in the United States on March 28, 2021
    Great read! My brother told our family about this book and I bought it and read it in a few hours. GSS runs in my family and we have lost many loved ones and have watched others live with it. It was an emotional read for me, as I went through the testing like those in the book, and I could completely relate to their feelings and experiences. Like Amanda, some of my family members want to be tested, while others don't. It was so interesting to read how Amanda's grandfather and father were diagnosed with the same diseases my grandfather was, before learning that he actually had GSS.
    3 people found this helpful
    Report
  • Reviewed in the United States on April 15, 2017
    This is a fascinating book, but the title and subtitle are misleading. There is no mercy in the inherited illness that runs through a family, and there is no rescue or cure in sight. Despite an interesting history of prion diseases and the dedicated researchers who study them, at the end of the day there is only the fact that a test can let someone know if they are a carrier. Amanda is a young woman who has the courage to get tested, then has to live with the knowledge that she is doomed to a hideous and early death. Despite this, she goes on to get married and makes the brave decision to have children, but only through a complicated procedure that will discard fertilized eggs that carry the defective gene. Meanwhile, her devout sister decides not to get tested and to have children without knowing their ultimate fate. Time will tell if this painful and disfiguring illness will strike in the coming generation.
    9 people found this helpful
    Report
  • Reviewed in the United States on July 18, 2024
    The story of the family is heart wrenching. The disease destroys the body and robs a family of one of its members. I know the family personally and can tell you they helped in this book in hopes to help others.
  • Reviewed in the United States on April 1, 2017
    I cannot imagine what this family went through to finally get the answer they needed. I wonder if the outcome would have been the same for a family without the medical backgrounds that some of them had.
    Loved the book because I have a personal interest in prion diseases and wanted to learn more. This book provided the scientific background as well as the human interest story of a family who had to endure it.
    2 people found this helpful
    Report
  • Reviewed in the United States on March 23, 2017
    If I could rate this book a 10, I would. This is honestly the best book I have read in quite sometime. It is an incredibly personal and honest look into a family's life dealing with a devastating and terminal hereditary disease that few doctors know anything about. And how their journey has led them to do anything and everything they can to fight back, no matter how diffult or controversial it may be.
    10 people found this helpful
    Report
  • Reviewed in the United States on September 4, 2017
    If you are interested in a medical mystery written in novel form this book is for you. I love the book and have deep respect for the Baxley family.
    One person found this helpful
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  • Reviewed in the United States on March 14, 2024
    Esta compra la ise ya que la hija de mi vecina lo necesita para unas tareas de la escuela y le resultó muy útil a ella.
    Report
  • Reviewed in the United States on May 20, 2017
    A compelling story of courage and resilience told masterfully by an incredibly gifted writer with great insight into the human condition. This is an inspirational story about normal people, who when faced with a horrible fate showed that they could rise above it and show us what genuine heroism really is. While it deals with a complex disease, the writer carefully explains its aspects in language that most anyone can understand and appreciate.
    2 people found this helpful
    Report

Top reviews from other countries

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  • Cliente Amazon
    3.0 out of 5 stars NOIOSO
    Reviewed in Italy on July 12, 2023
    E' un libro che parla di una malattia gravissima la CJD. I confronti fra le varie famiglie che hanno familiari affetti da questa patologia è prolisso, lagnoso, si dilunga in particolari inutili. Non fornisce nessuno spiraglio di speranza. Un libro triste.
    Report
  • Janet Bennett
    5.0 out of 5 stars This read opened my eyes to the everyday suffering that ...
    Reviewed in Canada on November 13, 2017
    This read opened my eyes to the everyday suffering that some folks go through. Very strong people in this book!

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