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There are currently 38 member reviews
for Mercies in Disguise
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Janet P. (Spokane, WA)
To know or not to know
To know or not to know seems to be the question considered in this book by author Gina Kolata. The reader is introduced to a family trying to discover the illness which they think may be plaguing more than one of the family members. The book takes us to research done by a doctor in New Guinea and combines his knowledge with gradual discoveries by this multi-generational family of professionals in a town in South Carolina. With close to unbelievable persistence they name a disease now called GSS and we learn to know each member of this family and see the love, joy, pain and heartache of dealing with this life changing illness they find is caused by a mutated gene. The question is asked on the book back..."would you want to know." The story grabbed me from the first page and I'm still not sure if I'd want to know, but I do think I would. I identified with and admired Amanda, the woman we follow throughout the story. Some of the specific medical research caused me to hit my computer for explanation, but it certainly didn't stop me from reading. I was fascinated and truly moved from the first page to the last. I soon realized my own search for term definition wasn't necessary because the difficult medical concepts were explained quite clearly. The book read like a novel and haunts me now two weeks after I finished it. I have since read extensively about this disease. I know people with Parkinsons and I have family members who have dealt with Alzheimers, but this degenerative illness is beyond anything I could ever imagine. Thank you Gina Kolata for a thought-provoking and moving story.
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Eileen C. (New York, NY)
When things go wrong
An interesting examination of one family's reckoning with a devastating, but rare, genetic disease. In clear, precise prose, Kolata examines the ethical and psychological issues that arise when science and religion collide. The first part of the book is equally divided between the family and science, but the latter part deals almost exclusively with the family and the issues it must deal with. A compelling, but also rather harrowing read.
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Lynne Sales
Science, family and a mystery solved
There have been several books this year that I've started and not finished. This, I'm happy to say, is not one of them. I immediately was drawn in to this well written book about a family struggling to understand why several family members have certain medical issues. With a degree in Biology and a fascination with genetics in particular, this story was right up my alley. But... you don't have to be a science person to enjoy this book. The character development, the story line, the weaving together of the science and research with the very moving descriptions of this family's challenges makes for a thought provoking and engrossing read. I highly recommend this book.
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Emily C. (Naples, FL)
MERCIES IN DISGUISE
Mercies In Disguise presents a real life crisis situation that reads like a suspense novel. The advances of modern science have given us many positive things. However, they have also presented us with many critical choices that have to be made that can affect our attitudes towards life and our futures in both positive and negative ways. From the first page I was totally involved in the dilemma of both Amanda and the Baxley family. They each faced a question that is the product of the modern science of DNA: Should they take a DNA test that would offer them the chance to find out if they had an inherited mutated gene that leads to the fatal neurological disorder-GSS? Or, should they refuse to take the test and retain their innocence, "hopefully preserving a part of the person you were before faced with a such a dilemma"? Each member, after thoughtful consideration, answered this question differently.
This book touched me deeply because I was also faced such a dilemma and the accompanying fears that it involves. Amanda's decision was not my decision. However, the anxiety and stress of what decision to make is the core of the issue.
I would highly recommend this book for the use of book club discussions, as it presents a timely and real world dilemma for discussion: such as, we really want to know the perils of our future?
This is a riveting read that challenges one's thinking about life, death and knowing the future.
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Diane D. (Blairstown, NJ)
I can't say I "enjoyed" this book, but...
...I can say I couldn't put it down. For some reason, I knew I HAD to try and get this one, because the subject sounded fascinating.
Though it was very technical, the back-story held my interest throughout, and I had to find out how the Baxley family handled all they were going through. Some of the things came as a surprise, but the love within the family came through loud & clear...at least to me.
I wasn't expecting the romance, which sure helped make the book more interesting, even though I worried that it couldn't last. My heart goes out to Amanda's family, with what they still have to go through, and I ended the book with tears in my eyes.
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Diane S. (Batavia, IL)
Mercies in disguise
Having a neurological disease is challenging, I live with one, but having a neurological disease that no one can diagnose, that has no treatment, no cure is terrifying. Having the symptoms of both Parkinson disease and Alzheimer, the inflicted slowly degenerate until death mercifully claims them. This is the disease confronting the Baxley family, a disease that has existed for generations but only when their father is inflicted do the two physician sons become aware of this fact. Setting out to find answers this is the story of a family unsure of their future, devastated by what has gone before.
Eventually an answer will be found and a test form the gene necessary to activate this fatal disease and then in the younger generation the question becomes, does one take the test and live with the fear of a death sentence or does one live their life never knowing until or if they are afflicted. This is the dilemma the younger generation, including Amanda, now in her late twenties, her father dying, must decide.
The book chronicles the discovery of this illness, the men behind it and the doctors who discover how to test for this very rare gene. These chapters are interspersed between chapters of the family. A wonderful family, whom one comes to know and care about, a family that has shared much happiness and much sadness. Although they all choose different paths, some of the decisions causing breaks in the family, they all come together in support, caring and a great deal of love and hope. The author does a wonderful job showing us the joy and heartbreak, following this family, chronicling their decisions, their doubts, their fears. That further sufferers of this or other neurological diseases may understand that they are so much more than what they are afflicted with, that life can still full, that making everyday count is perhaps bigger than the disease itself. I thank them for sharing their story with me, it was truly inspirational.
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Henry W. (Lake Barrington, IL)
Journeys:Mystery and Science
A very interesting and readable book.The author takes the reader on two journeys. One following the identification of a previously unknown disease and the research to understand the causes and begin to identify possible solutions. This journey begins on a remote island in New Guinea and continues in the top medical laboratories in the U.S. This part of the journey is populated with heroes and scoundrels. One will learn a great deal about Prion diseases. The second journey is that of a family as it traces the effects of the disease over five generations. The third generation take an active role in identifying and pursuing the genetic roots of the disease. The journey describes how each generation having different tools deals with the implications of the disease. The family moves from passive acceptance to the use of the latest medical technology to stop the onslaught of the disease in the fifth generation. As the various participants of the extended family deal with the disease their perspectives on life and ethics become a factor and are sometimes in conflict. The author goes to great lengths to detail through dialogue and history the impact of the disease on the family. I could not stop reading the book as i sought to learn more about the growing understanding of the disease and to know how the disease would be dealt with by the fourth and fifth generations. An enjoyable and educational read.
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