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

Joselin Linder

mar 2017 · HarperCollins

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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 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

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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.