The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future [9780062378897]

Overview

A riveting medical mystery about a young woman’s quest to uncover the truth about her likely fatal rare genetic disorder 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, 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 similarly strange circumstances. Delving further into her family history, she discovered that her great-grandmother had displayed symptoms similar to hers before her death. Clearly, this was more than a fluke.

Setting out to build a more complete picture of the inherited illness that haunted her family, Joselin 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 Joselin’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 mutation. Here, Joselin tells the story of their gene: the lives it claimed and the future of medical genetics with the potential to save those that remain.

Digging into family records and medical history, conducting interviews with relatives and friends, and reflecting on her own experiences with the Harvard doctor, Joselin 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 death, her own mortality, and her ethical obligations to herself and those closest to her.

This unforgettable medical memoir chronicles one family’s resilience and the scientific quest to understand the DNA that binds them.

• A Generational Medical Mystery: When Joselin Linder develops a strange, life-threatening illness, she uncovers a pattern of mysterious deaths in her family tree, linking her fate to that of her father, uncle, and even great-grandmother.
• Pioneering Genetic Research: Follow the decades-long hunt with world-class researchers at Harvard Medical School as they work to identify a private mutation affecting a single family and map the deadly gene responsible.
• The Human Side of Science: More than a clinical story, this is a moving account of a daughter reckoning with her father’s death, her own mortality, and the profound questions raised by the burgeoning field of medical genetics.
• An Unforgettable Family History: Based on years of digging through medical records and family archives, this gripping narrative explores the deep bonds of family, the weight of inheritance, and the enduring power of love.