- Copertina rigida: 261 pagine
- Editore: Ecco Pr (14 marzo 2017)
- Lingua: Inglese
- ISBN-10: 0062378899
- ISBN-13: 978-0062378897
- Peso di spedizione: 454 g
The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future (Inglese) Copertina rigida – 14 mar 2017
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“Linder’s memoir is a personal tale of loss, illness, ethical dilemmas and emotional fallout. Some of the details are harrowing. But Linder tells her story in a smart, wry voice devoid of self-pity.” (Chicago Tribune)
“Crisply written, deeply informed. . . . Linder captures the dread and fatigue that accompanies such an odyssey. The Family Gene nails this truth in a clear, honest voice, an invaluable addition to the literature that dramatizes severe illness and its impact.” (Minneapolis Star Tribune)
“Linder not only knows how to tell a compelling story but also how to use numbers to good effect and how to spell out complicated concepts… Her brutal honesty contributes to the power of this thoroughly researched chronicle of the quest to conquer chromosomal abnormalities.” (Booklist, Starred Review)
“Moving and deft. . . . Linder expertly balances the serious and often tragic with an indefatigable charm and warmth. This book is a wonderful blend of reflections on coming of age, medicine, and what it means to live against all odds.” (Publishers Weekly (Starred Review))
“Linder’s narrative is a combination of a fascinating medical detective story and an absorbing, powerfully written family chronicle. . . . She successfully integrates cutting-edge genetic research into her personal quest. (Kirkus)
“[Linder] views her future with measured optimism…Genealogists and readers interested in popular medicine may find this book more relatable than Alice Wexler’s Mapping Fate.” (Library Journal)
“The science is enthralling, the narrative’s race-against-the-clock tension is nail-biting, but at its core, this book is about the remarkable bond of family—and curse and gift of inheritance.” (Susannah Cahalan, author of Brain on Fire)
“A riveting story of a family, a disease, genetics, and the eternal path of living and dying we all walk. Intimate and instructive, immeasurably wise, Linder’s big-hearted and intelligent story of her tenacious search for answers to her family’s singular disease will leave you breathless.” (Jennifer Gilmore, author of Golden Country)
“Linder’s writing is magnetic. She weaves this deeply personal story with fascinating scientific discoveries—somehow leaving us hopeful, heartbroken, and inspired all in the same breath.” (Abby Sher, author of Amen, Amen, Amen)
“The Family Gene is both a riveting medical mystery and a heart-wrenching family memoir. With compassion and humor, Joselin Linder keeps us turning the pages until we fully share her stunning insight: that genetics is equal parts science and love.” (Andrew Blum, author of Tubes)
“Three of the most powerful forces in life are family, love and science. Joselin Linder, through a combination of the fates, found herself in a position to tell a first-person tale of how those forces can intersect.” (Bob Greene, author of Once Upon a Town: The Miracle of the North Platte Canteen)
“This unique book is at once a compelling mystery, a moving personal story, and a fascinating exploration of cutting-edge science. Scary and hopeful, perceptive and empathetic, it will give you new perspective on your own life choices and those of the people you love.” (Rachel Fershleiser, editor of Not Quite What I Was Planning)
Dalla quarta di copertina
A gripping medical mystery that opens a window onto the exploding field of genomic medicine
When Joselin Linder was in her twenties her legs suddenly started to swell. After years of misdiagnoses, doctors discovered a deadly blockage in her liver. Struggling to find an explanation for her unusual condition, Linder compared the medical chart of her father—who had died from a mysterious disease, ten years prior—with that of an uncle who had died under similarly strange circumstances. Delving further into the past, she discovered that her great-grandmother had displayed symptoms similar to hers before her death. Clearly, Linder’s illness was more than a fluke.
Setting out to build a more complete picture of the sickness that haunted her family, Linder approached Dr. Christine Seidman, the head of a group of world-class genetic researchers at Harvard Medical School, for help. Dr. Seidman had been working on her family’s case for twenty years and had finally confirmed that fourteen of Linder’s relatives carried something called a private mutation—meaning that they were the first known people to experience the baffling symptoms of a brand new genetic variant. Here, Linder tells the story of their gene: the lives it claimed and the lives that advances in genomic medicine still have the potential to save.Digging into family records and medical history, conducting interviews with relatives and friends, and reflecting on her own experiences with Dr. Seidman, Linder pieces together the lineage of this deadly gene to write a gripping and unforgettable exploration of family, history, and love. A compelling chronicle of survival and perseverance, The Family Gene is an important story of a young woman reckoning with her father’s Visualizza tutta la Descrizione prodotto
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Genetic investigation has come incredibly far in the last 30 years. I simply don't have the scientific vocabulary needed to write the technical things in this review. But Linder does a good job at explaining and defining; I figure I understood about 3/4 of what she wrote. Linder writes about the lives of the her paternal family and explains how the disease - still unnamed - began with a genetic mutation in the body of her paternal great-grandmother and was distributed down the proverbial genetic family ladder.
Back to the issue of genetic testing. There are actually two issues at work. Would you want to know if you hold the prospect of contracting Huntington's Disease or the disease the Linder family has? The implications are astounding to the way your live your life. The other testing is that of a fetus to see if he or she carries the gene of the disease. And if the tests showed you were pregnant with a baby with the disease, would you have an abortion? Linder writes about the genetic testing routinely done these days of prospective parents.
Joselin Linder's book is well-written and I learned a lot. I could have done without most of the coming-of-age parts but I guess that living under the scythe of life or death made her decisions and thoughts more unique than the average 30 year old.
One of the interesting things to me is how she turned a decades-long set of seemingly unrelated strange illnesses into a taut, plot-driven drama. Given the number of family members involved, it could easily have been a Dostoyevsky-an desk-buster. Instead it's a zippy 250pp read with what feels like a intro-level genetics course sprinkled throughout. It'll make you feel both brainy and thoughtful.
Ms. Linder connects her family's story to a number of developments and unusual cases from the dawn of modern medicine through today. She addresses the many problems of end-of-life decisions and family deaths with great thoughtfulness and empathy. In these ways the book is far more than a memoir. Instead it uses the structure of a family mystery to wrestle with and provide some guidance on medical issues that often seem too complex and abstract to handle.
Highly recommended. Easy to read and straightforward in style. Written with a wry sense of humor that surprisingly never becomes maudlin, even though there is real human loss throughout. It's astonishing someone can write so deftly about their own family's illness.
Highly recommend if you have ever had an interest in genetics or orphan diseases.
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