Joselin Linder. (2017). The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future. HarperCollins.

Joselin Linder. 2017. The Family Gene: A Mission to Turn My Deadly Inheritance Into a Hopeful Future. HarperCollins.

Joselin Linder, The Family Gene: A Mission to Turn My Deadly Inheritance Into a Hopeful Future. HarperCollins, 2017.

Joselin Linder. The Family Gene: A Mission to Turn My Deadly Inheritance Into a Hopeful Future. HarperCollins, 2017.

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The Family Gene

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Family Gene A Mission to Turn My Deadly Inheritance into a Hopeful Future

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A Mission to Turn My Deadly Inheritance into a Hopeful Future

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     Joselin Linder is a regular contributor to the NEW YORK POST, whose work has also been featured on THIS AMERICAN LIFE, MORNING EDITION and LIFE OF THE LAW. She spoke at the TEDX GOWANUS event in Brooklyn in 2014, presenting for the first time on the subject of her family gene and the deadly illness to which it leads. Exclusive to just fourteen people, the story of the gene will be told in Linder's new book, THE FAMILY GENE, coming out in 2017. She lives in Brooklyn with her husband and two dogs.

   • name: Joselin Linder

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2017-03-14T00:00:00-04:00

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The Family Gene

fullDescription

A "surprisingly buoyant" memoir about "how it feels to face the likelihood of a shortened life . . . reminds us that hope 'isn't the same thing as truth'" (New Yorker).
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, Joselin 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 similar circumstances. Delving further into the past, she discovered that her great-grandmother had displayed symptoms like hers before her death. Clearly, this was more than a fluke.
Setting out to build a more complete picture of the illness that haunted her family, Joselin approached Dr. Christine Seidman, the head of a group of world-class genetic researchers at Harvard Medical School. Dr. Seidman confirmed that fourteen of Joselin's relatives carried a brand new genetic mutation, making them the first known people to experience the baffling symptoms. Here, Joselin tells the story of their gene: the lives it claimed and the potential of genomic medicine to save those that remain. 
A compelling chronicle of survival and perseverance, The Family Gene is an important story of a woman reckoning with her father's death, her own mortality, and her ethical obligations to herself and those closest to her.
"Both congenial and engaging, despite the long shadow of a broken gene." —New York Times Book Review
"An invaluable addition to the literature that dramatizes severe illness and its impact." —Minneapolis Star Tribune
"Moving and deft." —Publishers Weekly, starred review

reviews

1. • premium: False
   • source: New York Times Book Review
   • content: "The Family Gene [is] both congenial and engaging, despite the long shadow of a broken gene."
2. • premium: False
   • source: Chicago Tribune
   • content: "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."
3. • premium: False
   • source: Minneapolis Star Tribune
   • content: "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."
4. • premium: False
   • source: Booklist, Starred Review
   • content: "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."
5. • premium: False
   • source: Publishers Weekly (Starred Review)
   • content: "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."
6. • premium: False
   • source: Library Journal
   • content: "[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."
7. • premium: False
   • source: Susannah Cahalan, author of Brain on Fire
   • content: "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."
8. • premium: False
   • source: Jennifer Gilmore, author of Golden Country
   • content: "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."
9. • premium: True
   • source:
   • content:

     Starred review from January 9, 2017
     Linder (New York Post and Morning Edition) delivers a moving and deft account of her journey to unearth a diagnosis of the mysterious family gene that caused her father’s and six other relatives’ untimely deaths. In this fascinating journey, she seamlessly moves from instructing on complicated genomic science to revealing the relatable follies of her 20s, never shedding wit or humor. She eloquently tells the story of her father’s protracted battle with a mystery illness that led to his painful and courageous search for medical answers. Once Linder starts to develop similar symptoms she continues his quest. She consults medical experts and genomic specialists who revel in the wonders, intricacies, and unsolved mysteries of genetic science. She is able to write deftly about medicine with the same casualness and verve she devotes to stories of aimless romance and the ennui of her mid-20s. With compassion and a keen eye, she digs into her family history, medical history, and contemporary genetic science. Lessons on DNA and the significance of X chromosomes in passing genes are woven into Linder’s intimate look at her ongoing struggle to stay alive. She 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.

10. • premium: True
    • source:
    • content:

      February 1, 2017
      How the author and her family have come to terms with the knowledge that they are the carriers of a fatal genetic mutation.Linder's narrative is a combination of a fascinating medical detective story and an absorbing, powerfully written family chronicle. In 1990, her father began to experience worrying physical symptoms, some of which are now shared by the author and her sister. His leg had swelled, and he was experiencing dizziness. A doctor himself, he sought medical advice to no avail. His symptoms seemed to parallel those of an uncle who died prematurely, but the doctors he consulted were baffled. At first, compression stockings seemed to alleviate the problem, but X-rays revealed an alarming amount of lymphatic fluid in his legs. Over time, these symptoms, still undiagnosed, returned and became progressively worse, leading to his early death in 1996. Linder describes how she was devastated by her father's death but also somewhat relieved that he was no longer in pain. An autopsy showed that his internal organs were "practically fused together." The death of her father's brother from similar symptoms--and their recurrence in other family members--suggested a genetic condition, which they confirmed through genetic testing. The author is now married and in relative good health, but she and her husband have hesitated to risk a pregnancy. She, her sister, and other relatives now take medications that hopefully will keep the disease under control. Despite her family's tragedies, Linder sees an important opportunity in her collaboration with top scientists seeking to understand and control this unique disease. "Medical genetics has given my family a way of addressing this illness," she writes, as well "the chance to change our fate....Our story is the story of science, its shortcomings and its miraculous capabilities to change the world." Linder successfully integrates cutting-edge genetic research into her personal quest.

      COPYRIGHT(2017) Kirkus Reviews, ALL RIGHTS RESERVED.

11. • premium: True
    • source:
    • content:

      Starred review from February 15, 2017
      In this medical-mystery memoir, journalist Linder offers an easy-to-understand primer on chromosomes and the future of genetics, while revealing how her own family lost the DNA lottery. Some of their ankles, arms, and abdomens swelled with fatty fluid, and they died from respiratory failure. Linder maintains suspense by keeping it unclear until the end whether she herself will become a victim of this previously unknown founder mutation, which may have begun with her great-great-grandmother, Ester Bloom. 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. She explains that 20,500 genes make up a human being and shares everything about herself, warts and all. When her father finally dies at age 49 from this awful genetic disease, she admits that she feels some relief: I felt almost thrillednot that my dad was dead, but that his suffering was over, and my suffering was over. Linder loses several other relatives and even a former boyfriend, who commits suicide. Her brutal honesty contributes to the power of this thoroughly researched chronicle of the quest to conquer chromosomal abnormalities.(Reprinted with permission of Booklist, copyright 2017, American Library Association.)

12. • premium: True
    • source:
    • content:

      November 1, 2016
      

      After years of enduring mysterious symptoms similar to those suffered by her father and uncle, already deceased, Linder learned that 14 of her relatives made up a founder population exhibiting the symptoms of a new genetic mutation. With a 50,000-copy first printing.

      Copyright 2016 School Library Journal, LLC Used with permission.

13. • premium: True
    • source:
    • content:

      March 1, 2017
      

      Five of Linder's (The Gamification Revolution) adult relatives died from a horrendous, medically baffling disease. Her family members have worked with researcher Christine Seidman of Harvard Medical School to find its cause--a unique genetic variant, inherited from either the author's great- or great-great-grandmother. Even while knowing that this genomic legacy puts her (and any child she might conceive) at risk for a grisly death, the author views her future with measured optimism. She hopes that with contraception and reproductive technology, her generation can prevent any further transmission of the deadly gene. Copious amounts of body fluids pervade the accounts of sickness and futile attempts at treatment; this is not a book for the squeamish. And the author chooses to minimize discussion of the ethical aspects of genetic disease (e.g., whether to opt for abortion in cases of known genetic defects). VERDICT Even though Linder's narrative is sometimes disjointed, genealogists and readers interested in popular medicine may find this book more relatable than Alice Wexler's Mapping Fate.--Nancy R. Curtis, Univ. of Maine Lib., Orono

      Copyright 2017 Library Journal, LLC Used with permission.

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A "surprisingly buoyant" memoir about "how it feels to face the likelihood of a shortened life . . . reminds us that hope 'isn't the same thing as truth'" (New Yorker).
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, Joselin 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 similar circumstances. Delving further into the past, she discovered that her great-grandmother had displayed symptoms like hers before her death. Clearly, this was more than a fluke.
Setting out to build a more complete picture of the illness that haunted her family, Joselin approached Dr. Christine Seidman, the head of a group of world-class genetic researchers at Harvard Medical School. Dr. Seidman confirmed that fourteen of Joselin's...

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A Mission to Turn My Deadly Inheritance into a Hopeful Future

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