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WORK TITLE: The Family Gene
WORK NOTES:
PSEUDONYM(S):
BIRTHDATE: c. 1975
WEBSITE:
CITY: Brooklyn
STATE: NY
COUNTRY:
NATIONALITY:
https://www.harpercollins.com/cr-124281/joselin-linder * http://nypost.com/2017/03/05/what-its-like-to-live-with-a-mysterious-killer-gene-disorder/
RESEARCHER NOTES:
PERSONAL
Born c. 1975, in OH; daughter of William Linder; married.
ADDRESS
CAREER
Writer and speaker. TedX Gowanus, speaker, 2014. Worked previously for an independent production company in New York, NY.
WRITINGS
Contributor to numerous periodicals, including New York Post. Work has appeared on “This American Life,” “Morning Edition,” and “Life of the Law.”
SIDELIGHTS
Joselin Linder is a writer and speaker. She is a regular contributor to the New York Post. Her work has appeared on “This American Life,” “Morning Edition,” and “Life of the Law.” She speaks and writes about health and science.
In 2014, Linder was a TedX Gowanis speaker. She spoke about a fatal gene unique to her familial line, referred to as an orphan gene. Linder has worked previously for an independent production company in New York City. She is from Ohio and has lived in San Francisco. She currently lives in Brooklyn with her husband and their two dogs.
In The Family Gene, Linder writes about the orphan gene that afflicts her family line. The gene, which has been studied for more than twenty years by Harvard Medical School’s Seidman Lab, has been the cause of death for five of her family members. The remaining carriers are at risk of dying from the same disease.
Linder first learned of the disease when she was sixteen, when she and her sister discovered her father in the bathroom, passed out with a gash on his head from his fall. He had become lightheaded after taking medication for swelling in his body. This was the first Linder had heard of her father’s body swelling, but it would be just the beginning of a handful of bizarre physical symptoms he would display before ultimately passing away from a mysterious illness.
A doctor himself, Linder’s father was accustomed to relying on the medical system to solve bodily ailments. Yet as Linder’s family sought help from numerous doctors, no one was able to pinpoint what her father’s sickness was. His symptoms, swelling, lymphatic fluid leaking in the lungs, devastating infections and a weak immune system, did not add up to any currently known illness.
As Linder’s father’s hospital stays grew longer and longer, her Aunt Joanie made a discovery. Looking back on old medical files, Aunt Joanie realized that Linder’s father, her nephew, was displaying the exact same symptoms that his uncle, Aunt Joanie’s late husband, Nathan, had experienced before his death at age thirty-four. The Linder family decided to dig deeper, and discovered that Mae, Nathan’s mother and Linder’s great-grandmother, had also died of an illness that sounded very similar to what Linder’s father was experiencing. As the familial history began to reveal more clues about the illness, Harvard genetics researcher Dr. Christine Seidman began to take an interest in the case.
In 1996, Linder’s father died at the age of forty-nine. Seidman continued to study the Linder family, flying them out to her lab at Harvard. Seidman was able to come to two concrete conclusions about the nature of the disease. The first was that the swelling of the limbs occurred in all family members, even those who lived a long, otherwise healthy life. The second was that the disease manifested very differently in men and women. While Linder’s father and great-uncle died within years of showing symptoms, her great-grandmother lived for many years before ultimately passing from the illness. With this information, Seidman was able to conclude that the cause of the illness was related to the X chromosome. Seidman was ultimately able to discern that the gene affects the portal vein in the liver. This condition eventually causes an inability to digest protein, ultimately leading to starvation.
As Seidman studied the disease, she came to understand that the Linders carry an orphan gene that had only existed for five generations. This sort of discovery is incredibly rare, but it also means that there is no knowledge of nor treatment for the illness.
Another important factor Seidman discovered was that anyone that had the gene would also have a functional heart murmur. With this information, the rest of Linder’s family could be tested for the illness. When Linder was twenty-two, she and her sister visited Dr. Seidman and found out that they both carried the gene. Although Seidman assured the women that they would not experience such a fast and devastating end as their father had, Linder was still horrified. As she tried to come to terms with this fate, Seidman continued to study the disease.
In 2003, when Linder was twenty-eight, Seidman and her team of scientists made a discovery. They were able to pinpoint the exact protein that was affecting the genetic code, meaning that if Linder or her family members decided to have children, they could avoid passing on the gene. With this information, along with the help of therapy, Linder overcame much of her despair about the disease. She moved to New York, married, and lives a normal life. Although her symptoms continue to show up over time, with the help of science, no one in the sixth generation of Linders has been a carrier of the gene. A contributor to Publishers Weekly described the book as a “wonderful blend of reflections on coming of age, medicine, and what it means to live against all odds.”
BIOCRIT
PERIODICALS
Booklist, February 15, 2017, Karen Springen, review of The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future, p. 10.
Kirkus Reviews, February 1, 2017, review of The Family Gene.
Library Journal, March 1, 2017, Nancy R. Curtis, review of The Family Gene, p. 98.
New Yorker, April 24, 2017, Sameen Gauhar, “Briefly Noted,” review of The Family Gene, p. 95.
Publishers Weekly, January 9, 2017, review of The Family Gene, p. 56.
ONLINE
Reform Judaism, https://reformjudaism.org (September 30, 2017), Courtney Naliboff, review of The Family Gene.
Star Tribune, http://www.startribune.com (March 24, 2017), Hamilton Cain, review of The Family Gene.*
This woman knows how she will likely die
By Joselin Linder March 5, 2017 | 5:35am | Updated
Modal Trigger This woman knows how she will likely die
Joselin Linder, 42, near her home in Brooklyn. Angel Chevrestt
JOSELIN LINDER, a 42-year-old writer who lives in Brooklyn with her husband, Aaron, and their dogs, Dee Dee and Orson, was born with a gene unique to her family. It has killed five members and threatens to do the same to the surviving carriers. She reveals the pain of her diagnosis and her family’s race to find a cure in her new book, “The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future” (Ecco), out this month. Here, she exclusively tells her story to The Post:
I have a wonderful life, and yet I spend every day knowing what will likely kill me.
Being aware of this fact feels like I’m watching a car drive into the side of a building in slow motion: “I should be able to stop this,” I think, “but how?”
Modal Trigger
I was 22 when I learned I am a carrier of an orphan gene, a genetic mistake unique to my family. It causes us to suffer from a potentially fatal condition that affects the portal vein in the liver, leading to an inability to digest protein — and ultimately starvation. The condition and the gene are not yet named, although they have been extensively studied for more than 20 years by Harvard Medical School’s Seidman Lab.
Only 14 people have ever been born with this gene, and five have died from it — every one of them is a member of my family. The gene manifests itself in adulthood, and the youngest person to die from it was my great-uncle Nathan, at age 34.
Little is known about our genetic mistake. I am part of the fifth generation of carriers, and the seven of us who are left in a race against time to find a cure.
I first witnessed the awful power of our family gene in 1991, when I was 16. My older sister Hilary and I were watching TV downstairs when we heard a thud. We ran upstairs.
Our father was on the floor, a gash on his head and blood spewing down his face.
Our dad had fallen head first into the banister. He had taken a pill for some light swelling in his legs, and when he stood up quickly from his nap had become woozy and passed out. I didn’t know my father had been taking pills for swelling; I didn’t know his body had been swelling.
We took my father, a physician, to his nearby office, where he was given 11 stitches and sent on his way. But solving the bigger riddle of his illness would prove harrowing.
A family doctor in Middle America, Dad was the kind of man whose patients named their children William after him. When he had to relay news of a dire illness he’d say, “Look, we’ve seen this before and someone, somewhere has survived this.”
Unfortunately, his own doctors couldn’t tell him the same.
Two years after he fell, he was at work and found he couldn’t breathe. An ER doctor put a tube into his chest. Suddenly, out gushed a fluid, the color of lemon meringue pie with the consistency of a milkshake.
We had spent years looking for any answer, and all along they were right here in our family tree
“What the hell is that?” his co-worker Kim asked.
The fluid was lymphatic exudate, or pure lymph. When lymphatic fluid leaks, it is almost always a symptom of something going very wrong, most typically with the heart or liver. But after extensive testing, doctors found nothing wrong with my dad.
His organs were strong; heart and liver disease, cancers and everything else were ruled out.
As my dad’s condition worsened over the next year, exploratory procedures caused catastrophic infections. Intensive-care units around the country became second homes.
One day, Dad was in the hospital again, surrounded by family, when my great-aunt Joanie showed up, clutching an old medical file from the 1960s. Her husband, Nathan, had died in 1961 at the age of 34. Uncle Nathan was my father’s uncle. His mother’s brother.
“Just look at Nathan’s chart,” Aunt Joanie said.
I looked inside the folder. At 21, I was old enough to understand its relevance. We had spent years looking for any answer, and all along they were right here in our family tree. My father was following in his uncle’s footsteps beat for beat — from the lymphatic fluid to the long hospital stays without any answers. But Nathan had died before anyone knew the reason.
Joanie also brought notes from the chart for Nathan’s mother, Mae, a Brooklyn native who had become sick in the 1930s and finally died at the age of 55 in 1954 of something that seemed suspiciously similar to the ailment afflicting her son — and now her grandson.
Modal Trigger
Joselin Linder with her husband Aaron and her twin niece and nephew, Addison and Billy.Levi Stolove
It was a “eureka moment.” Even if the outlook wasn’t great, we had our first clues.
Doctors passed my father’s medical chart around his growing team of doctors, which now spanned three states. Dr. Christine “Kricket” Seidman, a young superstar genetics researcher from Harvard showed up with a team and promised to help us.
In September 1996, my father died at age 49. One of the doctors who performed his autopsy told us that the years of fatty lymph pooling in his body cavity had left my father’s organs practically fused together.
Dr. Kricket flew our family members from around the country to her lab to test her theories. Based on three people, my great-grandmother, my great-uncle and my father, Dr. Kricket identified two key facts: The swelling of the limbs also occurred in healthy family members, including my father’s 73-year-old mother and 72-year-old aunt; and the illness looked strikingly different in the one woman — my great-grandmother Mae — who apparently had died from the disease.
That second point was crucial to Dr. Kricket’s theory. Whereas my father and his uncle had both been young men with sudden onsets that took their lives in under four years, my great-grandmother’s illness was long and slow, beginning in 1938 with a swollen arm and ending with her death in 1955. She died of infection; the men of starvation.
From these facts, she reached a valuable conclusion: The condition was linked to the X chromosome.
Women have two X chromosomes (called XX), while men are XY. For women, having a second X means their bodies have additional healthy information that can temper the bad.
Dr. Kricket also identified another shared symptom: a functional heart murmur. This, she decided, was how she could test the other members of my family for the gene.
In 1997, my sister and I — ages 23 and 22, respectively — arrived at Brigham and Women’s Hospital in Boston, where Hilary and I separately underwent ultrasounds, a wand pressed tightly into our ribs, seeing our hearts beat on a monitor.
“There it is,” Dr. Kricket said, noting a telltale murmur as the sound of my heartbeat filled the room.
It was conclusive. I had the gene.
When Hilary joined me after her test, I could tell from her dejected face that her result was the same.
Dr. Kricket took one of each of our hands before we left. “You girls will never have what your father had,” she said, meeting our nervous eyes with her serious ones. “Remember your beautiful grandmother?” she asked. Our father’s mother, Shirley, was alive and well and nearing 80, despite also having the gene. “Think of her.”
Modal Trigger
Joselin Linder with Hilary Griffith, her sister, and Shirley Linder, her grandmother who passed away in 2015.Levi Stolove
It wasn’t a promise. But it was hope, and we chose to believe it.
Dr. Kricket looked everywhere she could to find answers about our disease. Every lead was a dead end. She came to the realization that our illness was a fluke — a “genetic orphan,” a new variant that was unique to our family and only five generations old.
Illnesses caused by a single gene are rare enough, but to identify one at its beginning was an entirely new phenomenon.
Cystic fibrosis, which is also a single-gene disease sparked by one tiny genetic mistake, has been passed down through more than 2,600 generations over more than 52,000 years. It now has hundreds of thousands of carriers.
If our gene began with my great-great-grandmother, a woman named Ester Bloom who lived to be 80 but whose pictures reveal the telltale symptom of swollen legs, then it was only 100 years old and five generations deep — with only seven living carriers. (Two other carriers died later in life, and the gene wasn’t named as the cause.)
The years passed and my hopes faded. By the time I was 27, I was living in San Francisco, directionless and depressed, the weight of a possibly lethal diagnosis looming over me. My ankles had recently begun to swell, just like my grandmother who also started swelling in her 20s. Although I largely hid out in my apartment in a miserable relationship, playing computer video games and binge-watching “Sex and the City.”
Back home in Ohio, Hilary was dating like it was a mission, desperate to have kids as she neared 30. It remained unspoken that those children had a 50/50 chance of being born with an X chromosome that could kill them.
Meanwhile, Dr. Kricket continued to remind us that our great-aunt Norma, who had died at age 75, had lived a full life with the disease. “You will not get what your father had,” she repeated by phone whenever we called with our concerns.
Then something remarkable happened. In 2003, when I was 28, the Seidman Lab mapped our gene, identifying the exact protein culprit in our DNA. It meant that future members of our family would not have to be born with the orphan gene, as long as embryos are tested for it before being implanted through in vitro fertilization.
“When you are ready to talk about having kids,” Dr. Kricket told Hilary and me, “call me.”
Hilary was the first to call, after her marriage to Brian, a landscape architect, in 2005. She had the procedure, and in 2008 my healthy and gorgeous twin niece and nephew, Addison and Billy, were born, free from our family disease.
I improved my outlook through therapy and focusing on the future. My slightly swollen ankles were the only sign of my disease. I moved to New York, got a job working for an indie production company and started writing.
One night, I was at a Brooklyn bar for a friend’s birthday when I saw a tall blond man smoking a cigarette in the courtyard. Throwing caution to the wind, I decided to follow him to the bathroom line.
“Where are you from?” he asked me, with a voice deep and friendly enough for radio.
By the time I was 27, I was living in San Francisco, directionless and depressed, the weight of a possibly lethal diagnosis looming over me
“Ohio,” I answered.
“Me, too!” he said.
Aaron and I started dating. On our fourth date, I told him about my family gene and to my amazement he didn’t get spooked.
“It’s not a deal breaker,” he told me.
Four years after we met, we got engaged.
At the same time, I was 34 and my gene was poised to deal an ugly blow.
Flying to Ohio for a visit back home, I realized that my foot had doubled in size and was throbbing painfully inside my shoe. Try as I might, I couldn’t get my leather clog to slide off. I raced to Walmart, down the shoe aisle and grabbed a roomy pair of work boots two sizes too large. I went to the school-supplies section for heavy scissors, sat on the floor and cut into my shoes until I could excavate my foot.
Both my foot and leg had swelled with fluid.
I didn’t panic. And when I returned to New York, I just shut down. While my fiancé begged me to get my leg checked out, it took me six months to gather the courage to see Dr. Kricket.
After an MRI, she sat me down and broke the news.
“You have a blockage in a main pathway of your liver — the portal vein.”
A cousin on my father’s side named Valerie had the exact same complaint.
She had almost died of a stroke at 58 and was still recovering.
A few months later, in July 2011, Aaron and I arrived at the Jiminy Peak ski resort in the Berkshires for our wedding. The adorable white ankle boots I had picked out to wear for the ceremony no longer fit my swollen foot. In its place, Aaron found a pair of hideous-but-comfortable Velcro shoes, which he placed like glass slippers on my feet.
Modal Trigger
Linder, 42, near her homeAngel Chevrestt
“Your dress will cover it,” he assured me.
My sister and her 2-year-old twins walked down the aisle. Valerie, now almost completely recovered from her stroke, came, as did every other family member carrying our gene. The symptoms for everyone are different. Some share my blocked portal vein, including my sister and another cousin in our generation. Others share the swelling. But, at that moment, I felt the strength of us all being in it together.
After the wedding, I underwent a procedure to reopen my blocked vein. Unfortunately, the procedure failed, and I was upset, not only because the
ailment will continue to pose a greater risk to my health in the future. It also complicates my ability to carry a child, even with gene-tested embryos free from the disease.
At the follow-up appointment, with Aaron at my side, I asked my doctor, “Can we have children?”
He shrugged and gave a blunt reply, “I wouldn’t.”
Aaron took my hand and kissed me.
“It’s a good thing we love dogs,” he said.
At that moment, I couldn’t have loved him more.
Today, we are happily married and leading a happy and productive life. Right now, all the carriers are still alive and waiting for a cure, which Dr. Kricket still believes we will find in our lifetime. We are thrilled that, so far, no one in the sixth generation of our family — 23 children in all — has been born with the gene.
But, in the meantime, I’m still a ticking time bomb.
There are days I have to force off my fears in order to get out of bed.
And there are other days when I know that being this near death reminds me how much I love life. It makes every part of every day something I am joyously grateful for.
Sometimes I think that — if my life is long — having spent it with this kind of awareness, and everything I know about my body, will have been a gift.
Joselin Linder
Joselin Linder
Aaron Fanin
Biography
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.
Joselin Linder - HarperCollins Speakers Bureau
Joselin Linder
Stopping a Deadly Gene in its 6th Generation
SPEAKING TOPICS
Genetics
Ethics and Genetics
Individualized Health Care
The Realities of Living with Rare and Orphan Diseases
Genetic Testing and Reproduction
TRAVELS FROM
New York
Joselin Linder is a regular contributor to the New York Post, whose work has
been also featured on This American Life, Morning Edition, and Life of the Law.
In 2014, Linder spoke at the TEDX GOWANUS event, 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 is told in
Linder’s book, The Family Gene (Ecco).
When Linder was in her twenties her legs suddenly started to swell. After
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When 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, Linder 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 greatgrandmother
had displayed symptoms similar to hers before her death.
Clearly, this was more than a fluke. Digging into family records and medical
history, conducting interviews with relatives and friends, and reflecting on
her own experiences with Dr. Christine Seidman, the head of a group of
world-class genetic researchers at Harvard Medical School, Linder 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.
Linder’s presentations allow for audiences to hear a unique story from a
patient’s perspective. With a passion for sharing the journey of her genetics
and her family’s, Linder speaks on areas of health and science in an
approachable and accessible manner.
Currently, Linder resides in Brooklyn with her husband and two dogs.
Briefly Noted
Sameen Gauhar
The New Yorker. 93.10 (Apr. 24, 2017): p95.
Copyright: COPYRIGHT 2017 Conde Nast Publications, Inc.. All rights reserved. Reproduced by permission of The Conde Nast Publications, Inc.
http://www.newyorker.com/
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Full Text:
Briefly Noted
The Family Gene, by Joselin Linder (Ecco). When the author was sixteen, her father fell ill with a mysterious, debilitating, and ultimately fatal disease. "We were not a family who routinely dealt with catastrophe. We lived in Ohio," she drolly observes. Twelve years later, she had contracted the disease. By then, researchers were closer to identifying the cause-a genetic variant unique to her Ashkenazi Jewish family. This surprisingly buoyant book chronicles the search for a cure as well as the family's life stories, rich in their ordinariness. Describing how it feels to face the likelihood of a shortened life-including her conflicted desire to be a mother, despite the risks for any child-Linder reminds us that hope "isn't the same thing as truth."
Linder, Joselin. The Family Gene: A Mission To
Turn My Deadly Inheritance into a Hopeful
Future
Nancy R. Curtis
Library Journal.
142.4 (Mar. 1, 2017): p98.
COPYRIGHT 2017 Library Journals, LLC. A wholly owned subsidiary of Media Source, Inc. No redistribution
permitted.
http://www.libraryjournal.com/
Full Text:
Linder, Joselin. The Family Gene: A Mission To Turn My Deadly Inheritance into a Hopeful Future. Ecco:
HarperCollins. Mar. 2017. 272p. bibliog. ISBN 9780062378897. $28.99; ebk. ISBN 9780062378927. SCI
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 rentable than Alice Wexler's Mapping Fate.--Nancy R. Curtis, Univ. of Maine Lib., Orono
Source Citation (MLA 8
th Edition)
Curtis, Nancy R. "Linder, Joselin. The Family Gene: A Mission To Turn My Deadly Inheritance into a Hopeful Future."
Library Journal, 1 Mar. 2017, p. 98. General OneFile, go.galegroup.com/ps/i.do?
p=ITOF&sw=w&u=schlager&v=2.1&id=GALE%7CA483702190&it=r&asid=eb9db07c3b48c91b93201b1e203c2c14.
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The Family Gene: A Mission to Turn My Deadly
Inheritance into a Hopeful Future
Karen Springen
Booklist.
113.12 (Feb. 15, 2017): p10.
COPYRIGHT 2017 American Library Association
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Full Text:
* The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future. By Joselin Linder. Mar. 2017.
272p. Ecco, $28.99 (9780062378897); e-book (97800623789271.616.99.
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 thrilled--not 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. --Karen Springen
Source Citation (MLA 8
th Edition)
Springen, Karen. "The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future." Booklist, 15
Feb. 2017, p. 10+. General OneFile, go.galegroup.com/ps/i.do?
p=ITOF&sw=w&u=schlager&v=2.1&id=GALE%7CA485442449&it=r&asid=cf16817a2998c77a1867a0e077bea82d.
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Linder, Joselin: THE FAMILY GENE
Kirkus Reviews.
(Feb. 1, 2017):
COPYRIGHT 2017 Kirkus Media LLC
http://www.kirkusreviews.com/
Full Text:
Linder, Joselin THE FAMILY GENE Ecco/HarperCollins (Adult Nonfiction) $28.99 3, 14 ISBN: 978-0-06-237889-7
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.
Source Citation (MLA 8
th Edition)
"Linder, Joselin: THE FAMILY GENE." Kirkus Reviews, 1 Feb. 2017. General OneFile, go.galegroup.com/ps/i.do?
p=ITOF&sw=w&u=schlager&v=2.1&id=GALE%7CA479234431&it=r&asid=39baf66e0fdf9091cec3cf38dafeb0c0.
Accessed 30 Sept. 2017.
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The Family Gene: A Mission to Turn My Deadly
Inheritance into a Hopeful Future
Publishers Weekly.
264.2 (Jan. 9, 2017): p56.
COPYRIGHT 2017 PWxyz, LLC
http://www.publishersweekly.com/
Full Text:
* The Family Gene:
A Mission to Turn My Deadly Inheritance into a Hopeful Future
Joselin Linder. Ecco, $28.99 (272p) ISBN 978-0-06-237889-7
[ILLUSTRATION OMITTED]
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. (Mar.)
Source Citation (MLA 8
th Edition)
"The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future." Publishers Weekly, 9 Jan. 2017,
p. 56. General OneFile, go.galegroup.com/ps/i.do?
p=ITOF&sw=w&u=schlager&v=2.1&id=GALE%7CA477339334&it=r&asid=7b4038b5ed4e6ccd811f9c95ab8306f6.
Accessed 30 Sept. 2017.
Gale Document Number: GALE|A477339334
The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future
BY JOSELIN LINDER
REVIEW BY: COURTNEY NALIBOFF
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The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future, by Joselin Linder
The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future, by Joselin Linder
As scientists learn more about disease-causing mutations in the Ashkenazi Jewish gene pool, it becomes increasingly urgent for couples in this demographic to undergo genetic testing before having children. The likelihood of Tay-Sachs, Gaucher disease, cystic fibrosis, and other genetic diseases are significantly more common among Jews of Eastern European origins because of centuries of geographic and religious isolation and in-marriage within the “tribe.”
Tests for many genetic diseases are available to determine whether a parent-to-be is a carrier, and through ever-evolving fertility methods, it is increasingly possible, though not without controversy, to ensure healthy offspring.
But what happens when a new genetic disease appears in the genome?
Joselin Linder, a contributor to the New York Post and NPR, has written a memoir of her family, which has the distinction or misfortune of being host to a founder mutation – the first known incident of a potentially deadly liver dysfunction. The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future examines not only the science behind treating this disease, but the psychological toll of knowing one's genetic inheritance may include “a ticking time bomb.”
Linder's first inkling of a problem arose when her scrupulously healthy and athletic father began to experience swelling in his ankles. This led to difficulty breathing, and the discovery of lymphatic fluid, or chyle, filling his abdominal cavity. When no explanation for the chyle was found, doctors questioned his cardiac health and incidence of a repaired childhood murmur. This yielded no answers, but a glimpse into his family's history brought a few things to light: unexplained swelling and fluid accumulation was the cause of death or discomfort for family members in at least two previous generations.
These revelations about her family’s medical history impact Linder’s mental well-being, causing her to become lethargic as she contemplates the increasing odds of her contracting the mysterious ailment that led to her father’s agonizing death.
I was caught in whatever state I was in. If I was eating, it was really hard to stop. If I wasn't eating it was really hard to start. If I was sitting, why stand? If I was standing, why sit? Playing or not playing computer solitaire. Drinking or not drinking whatever alcoholic beverage was closest. I closed bars because I couldn't leave. I became practically agoraphobic because I couldn't go out. I couldn't get a job because I didn't have a job...I didn't have any wishes anymore.
Linder's writing voice, which attempts to recapture the internal monologue of a traumatized young woman, sometimes slips into false-sounding colloquialisms, such as “for realsies.”
Where she excels is in her clear scientific explanations of genome mapping, her family's genetic mutation, and how the resulting disease affects body function:
There are blood pressures in our liver that pull blood from our intestines and our spleens in order to purify it...But in my family, a mutant gene causes liver pressures to become confused and the liver no longer is able to properly siphon the toxins out of our blood.... It's this little glitch that causes this complication throughout our bodies. When it does its worst, it tackles our lymphatics, slowly knocking out our body's ability to absorb nutrients, causing us to slowly starve.
The team of doctors and geneticists at Brigham and Women's Hospital, led by Dr. Christine "Kricket" Seidman, who charted the disease, began its work largely in the dark, knowing only the disease’s symptoms. In mapping Linder’s genome, the team traced the genetic variant to the X chromosome. This discovery allowed her sister and brother-in-law to conceive a child using in vitro fertilization to create a variant-free embryo.
The still unnamed genetic variant that has plagued Linder's family has ended with her generation, as she and her husband won't have children. The symptoms she, her sister, and cousin experience are somewhat controlled via medication. And as genetics and genomics continue to evolve an increasing number of individuals will be able to overcome what might otherwise have been their DNA destiny.
The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future is a worthwhile read that is sure to hit close to home for anyone in a genetically compromised population or family.
Courtney Naliboff lives, writes, teaches, and parents on North Haven, an island off the coast of Maine. She is a columnist for Working Waterfront, and writes about rural Jewish parenting for Kveller.com.
View all posts by Courtney Naliboff
Review: 'The Family Gene' by Joselin Linder
NONFICTION: "The Family Gene" blends one woman's personal and scientific odyssey with clear insights.
By HAMILTON CAIN Special to the Star Tribune MARCH 24, 2017 — 9:57AM
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Joselin Linder Photo by Aaron Fanin
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Blood tests and CT scans, 911 calls. Anguished moments in ICU wards. Hushed discussions with clinicians of every stripe. When our oldest son was diagnosed with a genetic disorder in 2003, my wife and I were beamed into an alien, frightening world, one with its own language and rules and moving targets. Our quest to pinpoint a mutation on a gene called SMN1, located on chromosome 5, meandered for almost a year, ravaging us emotionally, walling us off from work and friends.
In her crisply written, deeply informed memoir, “The Family Gene,” Joselin Linder captures the dread and fatigue that accompanies such an odyssey, how it ripples out to engulf multiple branches of a family.
In the early 1990s, while Joselin and her older sister were still teenagers, her father, a physician in Ohio, complained of swollen ankles. More ominously, his lungs filled with chyle, a buttermilk-like fluid secreted from lymph nodes, baffling his own doctors. Despite a revolving door of hospitalizations and desperate, I’ll-try-anything treatments, Bill Linder succumbed in 1996, months shy of his 50th birthday, a fate eventually shared by two other male relatives.
But the Linder women were also affected. Joselin had grown up with the tale of her great-grandmother Mae, a Brooklyn Jew who suffered the same symptoms as Bill, as did her daughters — swollen feet, labored breathing, chyle draining into organs.
The women’s symptoms were milder, and they lived longer, spurring a Harvard geneticist, Christine “Kriket” Seidman, and her lab to suspect a glitch on the X (or sex) chromosome — women with a mutation could rely on their second X to ameliorate the threat.
Linder evokes the twists and turns of Seidman’s yearslong investigation with a wry wit and flair, depicting X as “the Marilyn Monroe of chromosomes — Norma Jeane, to those who didn’t know what she could become with a little red lipstick and a lot of peroxide.”
"The Family Gene: A Mission to Turn My Deadly Inheritance Into a Hopeful Future," by Joselin Linder
"The Family Gene: A Mission to Turn My Deadly Inheritance Into a Hopeful Future," by Joselin Linder
One of Seidman’s colleagues eventually maps the mutation. Armed with an answer, Linder marches forward, with her customary spunk, into the arena of personalized medicine, determined to rescue herself and other afflicted loved ones.
Like any memoir, “The Family Gene” detours into details of the author’s personal life. Linder occasionally indulges herself with vexing romances and beer-soaked misadventures as she roams from city to city after her father’s death. Less might have been more here.
But her underlying insight is revelatory: For those of us whose lives are circumscribed by our caregiver roles, we don’t just shed who we are in the name of duty. It’s not our job to inspire. We’re still the same people — passionate, ornery, big-hearted, selfish — but with an added facet that we hope makes us better humans.
“The Family Gene” nails this truth in a clear, honest voice, an invaluable addition to the literature that dramatizes severe illness and its impact.
Hamilton Cain is the author of “This Boy’s Faith: Notes From a Southern Baptist Upbringing,” and a former finalist for a National Magazine Award. He lives in Brooklyn.
The Family Gene
By: Joselin Linder.
Publisher: Ecco, 261 pages, $28.99.