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

por Joselin Linder

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A riveting medical mystery about a young woman's quest to uncover the truth about her likely fatal 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 the past, 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 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 genomic medicine 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.… (más)
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“You should fight to live long and well, you should experience meaningfulness as often as you can, and the rest of the time you should just ignore death completely.” – Joselin Linder, The Family Gene

Non-fiction memoir about a family with a genetic variant. Joselin Linder inherited a unique gene from her father, which causes a currently unnamed disease that has resulted in the deaths of five family members. In this memoir, the author documents her family’s pain and suffering, the genetic research involved in tracing the source, and the medical analysis involved in discovering a treatment. She talks about what it is like living with a potentially fatal condition.

This book covers a good amount of medical science in a manner easily understood by a layperson. It shows how this family turns tragedy into an opportunity to work in partnership with doctors and scientists to understand and reduce the impact of this unique disease. The author intersperses information about the history and recent advances in genetics into her personal story. The writing style is colloquial, with humor sprinkled throughout, as a respite from the weighty topics. Linder only touches the surface of the genetic engineering debate, instead offering her personal insight from a perspective of someone with a significant stake in the outcome.

Recommended to those interested in medically-oriented memoirs, hereditary diseases, and genetic research. I think fans of The Immortal Life of Henrietta Lacks, Brain on Fire, or Lab Girl may also appreciate it.
( )
  Castlelass | Oct 30, 2022 |
The Family Gene by Joselin Linder is everything I wish for in a medically-oriented memoir. Linder blends the science of genetics deftly with her own family’s story. It was so compelling that I flew through the book in just a day or so.

When Joselin is just fifteen, she and her family begin to watch her father die a slow, painful and frankly horrific death. He literally never received a diagnosis for this fatal disease. The family begins to realize that his condition was very similar to two other members of his family, now also deceased. Then his brother dies. Sounds overwhelmingly sad, doesn’t it?

Full review at http://thebibliophage.com/book-review-family-gene-joselin-linder/ ( )
  TheBibliophage | Mar 20, 2018 |
fascinating theme, a family with a new genetic disease but very poorly written ( )
  Janientrelac | Nov 21, 2017 |
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A riveting medical mystery about a young woman's quest to uncover the truth about her likely fatal 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 the past, 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 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 genomic medicine 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.

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