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

4.04  ·  Rating details ·  905 ratings  ·  134 reviews
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
Hardcover, 272 pages
Published March 14th 2017 by Ecco
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Average rating 4.04  · 
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Start your review of The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future
(3.5) My eye was drawn to The Family Gene because of the medical mystery aspect: 14 members of Linder’s Ashkenazi Jewish family are the only known exemplars of their particular genetic disease, so rare it doesn’t have a name or surefire treatment protocol, but now at least has a location on a chromosome.

Linder’s awareness of her family’s peculiar medical problems began when her father, William, himself a doctor near their home in Columbus, Ohio, started having a persistent build-up of lymph (als
Jessica Jeffers
Feb 26, 2017 rated it really liked it
Shelves: netgalley, nonfiction
When Joselin Linder was a teenager in the late 80s, her father grew ill. His symptoms—primarily, that his body was swelling and his lungs were filling with fluid leaking out of his lymphatic system—confounded doctors, as they didn't seem to align with any known condition. There seemed to be no discernible reason for this to be happening to an otherwise healthy, middle-aged man. And there seemed to be no way to treat his symptoms.

But some older relatives recognized the symptoms: they were the sa
Joy D
“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
Barbara (The Bibliophage)
Jul 05, 2017 rated it really liked it
Shelves: medical-memoir, 2017
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
Jan 02, 2017 rated it it was amazing
A compelling medical mystery that involves a faulty gene that is inherited. The author's legs began to swell when she was in her early 20's and the medical profession was stumped as to the cause. So began Joselin's journey to decipher what is truly going on. She begins by reviewing her father's medical chart (he was a physician) as to what caused his death. This is a true medical detective book that will leave readers cheering and hoping for Joselin and wondering about their relatives that died ...more
Caidyn (he/him/his)
This review and others can be found on BW Book Reviews.

This book took me a long time to listen to because it was interrupted by my finals. No work means no listening to books. Even though it was good, I couldn't listen to it on my free time thanks to being a responsible college student and doing this dreadful thing called "studying". Warn your kids about it. It can get pretty terrifying.

As I said, this was a good book. It was fun and I really enjoyed how it was read. Just very upbeat and light m
May 28, 2017 rated it really liked it
I was pulling into the parking lot of the supermarket where I shop, listening to NPR. The interview with Ms. Linder that was so fascinating, so interesting, I sat in the parking lot until the interview ended. And I promptly ordered the book.

I have a potentially fatal genetic disorder, but at 72 I do not give it much thought. I know of no one in my family history who had it. (But could it have been properly diagnosed?)

Is my case a "one-off," a one time thing? Am I the first documented case in my
Jessica - How Jessica Reads
FASCINATING. I couldn't put this down. An intriguingly sad mix of science, genetics, and family tragedies. ...more
Sep 18, 2018 rated it it was ok
Shelves: kindle
I read this book quickly because I skimmed or skipped the essays about genetics, the movie reviews and the book reports. There wasn’t much left. What there was of the author’s story of her family’s genetic mutation was interesting but inconclusive.

This was an Amazon deal that I bought for a buck or two. These are always crapshoots. I have realized two things from these books: editors serve a vital function, and Amazon reviews are unreliable.

I did make it all the way through this one though (ev
Definitely not a science book (really not a science book... would have benefitted from a science editor in fact) but a book about living with a rare genetic disease from the person with that disease...
Aug 07, 2018 rated it liked it
Shelves: bookclub
Sort of interesting genetic mutation in one family. But would have made a better article. Repetitive and side tangents. Author clearly doesn't understand much biochemistry. ...more
Jessica Mannion
Apr 08, 2017 rated it it was amazing
Joselin Linder's “The Family Gene” is the incredibly moving story of one woman's quest to understand the deadly genetic disease that has plagued her family for several generations. But, in spite of its tragic subject-matter, this book is ultimately about hope. As a writer, reporter, and self-professed science-nerd, Linder shares both personal and family stories generously, while simultaneously chronicling the decades long search of medical professionals struggling to understand and treat her fam ...more
Oct 17, 2017 rated it it was amazing
Joselin Linder writes a book that is one half memoir and another medical mystery. She describes watching her physician father become more and more unwell, while doctors struggle to figure out what is wrong with him. It is not until other family members succumb to the same symptoms and problems, that the family and doctors begin to realize that this disease that only affects their family has a genetic cause.

With advances in genetic testing many of the family bring themselves forward to be tested
Patricia Farley
Jan 09, 2018 rated it it was amazing
This was the first book I've won in a Goodreads contest and it was fantastic! I finished it very quickly as it was hard to put down. The book starts off with her dad dying from a mysterious illness which is from a gene passed down through an X chromosome. There are many scientific and medical terms used throughout this book but these terms are explained so they are easily understood. Ms Linder is also found to have this gene and is very honest about what is happening to her and the members of he ...more
Peyton Tracy
Apr 29, 2019 rated it really liked it
This is a fascinating and refreshingly honest memoir that gripped me from beginning to end. It also functions as an informal and conversational introduction to genetics and genetic diseases, their study, and developing treatment. The author stops to explain things as she learns them or as their context becomes important and doesn’t shy away from sharing her opinion on them. She doesn’t shy away from much of anything, honestly, sharing every painful detail of her family’s medical history and tack ...more
Bethany Zakrzewski
This is a lovely tribute to a family that underwent a great deal of impossibles. I had to take time reading it because it is full of slow painful deaths. The deviation between this and books like Tuesdays with Morrie is that this shows how health is at the hands of the individual. Not all diseases could be solved like a mystery for sure, and this case took modern scientific advances and very dedicated doctors and researchers. But more importantly, it took a very well-informed and motivated famil ...more
Sep 05, 2017 rated it really liked it
This is the tale of searching for a cure for a rare or "orphan" disease. Lindner's family is dying from mysterious causes. She traces her family tree and finds several other deaths like her father's.

Part investigation, part medicine, Linder teaches readers about genetic testing and gene therapy. You could compare this with The Immortal Life of Henrietta Lacks" with much more science thrown in.

The book is sad and uplifting t the same time. Be forewarned, reading this at night may keep you up unt
Esther Bradley-detally
Apr 27, 2017 rated it it was amazing
My last two review disappeared into the ether; this is an excellent book; fraught with horror, courage, tension, maturity, bravery, and deals with current issues. Genetic diseases are cropping up with extreme rapidity, and many are not known about; highly recommend book
Apr 28, 2019 rated it really liked it
Shelves: audio-book
More informative than personal, this is the story of a gene that wreaks absolute havoc on multiple generations of a family. I learned so much listening to this audiobook. The writing was great and always to the point. If the topic interests you, you’ll no doubt enjoy this.
Kirsten Kinnell
Oct 12, 2017 rated it really liked it
Incredibly compelling as both a medical mystery and a memoir. Lovely writing that makes complicated science accessible, and a voice that by turns is hilarious and heart breaking.
Janis Mills
Apr 18, 2017 rated it really liked it
It takes a certain amount of courage to know how you are going to die according to my belief. The author wrote of her gene pool and the effort and heartache to track down the disease taking family members too young. It was a fascinating story told with courage.
Mar 29, 2018 rated it really liked it
A teenager watches her father, a doctor, die from a very mysterious disease. His daughter over time starts to find others in her family that died from the same thing. She herself started to show similar problems. This is her story and her search for answers.
Mar 07, 2017 rated it it was amazing
Very interesting and well written! I love medical-mystery nonfiction!
Jul 23, 2017 rated it really liked it
Well written and interesting, but the medical stuff was a little gross and deeply detailed for my taste though I guess I should have expected that going into it. It was a fascinating story of how they are trying to determine the genetic issues that are causing the illnesses in her family.
May 28, 2017 rated it liked it
Shelves: 2017
In The Family Gene author Joselin Linder, holder of said gene, writes about the experience of discovering her family was passing a variant and ultimately fatal gene through their family tree. After realizing there might be a problem, her family connects with several doctors who become champions for the family and develop years of time researching their new, unnamed condition.

The book provides plenty of background information on genetics for the uninitiated, and some interest factoids for those f
Apr 08, 2017 rated it it was amazing
I cannot recommend this book highly enough. This true tale of the author's family's genetic anomaly and the search for a cure had me enthralled from the first page to the last. Seriously, I lost sleep due to not being able to put the book down. If you're interested in genetics, like medical mysteries, or just enjoy a good read, pick up this book right now. You won't be disappointed. ...more
Jan 14, 2019 rated it liked it
Shelves: nonfiction, memoir
This book was OK. I've read better, I've read worse. The first half was more compelling to me than the second. Also, some of the writing was awkward -- I often found myself mentally rewriting the author's sentences to improve clarity or tighten language. But, it was a quick read and I learned a lot. ...more
Sep 05, 2017 rated it it was amazing
I am not generally a reader of nonfiction, so it means alot when I say this was a page-turner.

Part memoir, part love letter to her dad and part genetics lesson--it was just amazing.

You will laugh a lot and you will learn a lot. Enjoy.
Jan 28, 2019 rated it liked it
A compelling book in desperate need of an editor. To be fair, it was hard to put down, and it's been a while since I've read that type of book. ...more
Mark Syron
Jun 24, 2018 rated it really liked it
Shelves: nonfiction
I loved this book. I listened to this book through the audiobook and loved the narrator. I got interested in this story as the last memoir I read about William's Syndrome. Jumping to a story of a known syndrome versus a medical mystery isn't such a jump in topics. This story has many people in Joselin family starting from her Grandmother had seemed to inherit a dangerous disease that caused starvation and build up of fluid. The telltale warning sign of who has this disease in this family is a he ...more
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Play Book Tag: The Family Gene by Joselin Linder - 4 stars 1 12 May 08, 2019 10:14AM  
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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 ...more

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