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To Catch a Killer Gene: Sisters Race to Stop Mystery Disease

 
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CamrnCrz1974



Joined: 18 Nov 2004
Posts: 16691
Location: Phoenix


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PostPosted: 03/01/17 12:59 pm    ::: To Catch a Killer Gene: Sisters Race to Stop Mystery Disease Reply Reply with quote

Childhood friends and members of my synagogue, Hillary and Joselin Linder, shared their incredibly brave story a few years ago (in the attached link). Joselin, like me, was a bar/bat mitzvah tutor; in fact, she tutored my brother for his bar mitzvah.

Their father died in his 40s after developing an unknown ailment; his autopsy revealing a body both starved and bloated, as the article notes.

Both sisters, who are now in their early 40s, are showing signs and symptoms of the uncurable disease/condition and have been told by their doctors that they have “a ticking time bomb” inside them. They are part of research and the effort to potentially stamp out a genetic killer before it spread in the gene pool.

Excerpts:

Quote:
The Linders’ story is personal, of course, but it’s also a public milestone. It’s the first known example of genetic medicine not only identifying a deadly new mutation—akin to the next Huntington’s or Cystic Fibrosis—but of a family banding together to stop a disease before it cuts a path through society itself. It illustrates the promise of genomic medicine, which may one day stop disease as we know it, but also the soul-troubling questions that arise when people have a hand in their own evolution.

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Quote:
The tantalizing question is, what if science could have been there at the founding? What if the first carriers of every disease knew it and chose not to pass it on? Would we have Cystic Fibrosis or Huntington’s? Would we even have disease as we know it? And given what we know now, will science one day be able to eradicate all but a baseline of genetic illness?

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Quote:
The Linder sisters are sharing their story for the first time, because they hope to spread awareness of genetic disease in general, and draw attention to their own deepening sickness in particular. But at a time when religious conservatives, techno-skeptics, and old guard right-to-lifers have launched a new effort to stem the spread of genetic science, they also see the need to speak up for the technologies that have gotten them this far. “It’s genetics, not eugenics,” says Joselin, pushing back against the e-world favored by critics.


http://www.nbcnews.com/news/us-news/catch-killer-gene-sisters-race-stop-mystery-disease-n14451


CamrnCrz1974



Joined: 18 Nov 2004
Posts: 16691
Location: Phoenix


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PostPosted: 03/01/17 12:59 pm    ::: Reply Reply with quote

Joselin's book, "The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future," will be available for purchase (hardcover and Kindle) on March 14, 2017

Here is the book excerpt from Amazon.com:

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.

https://www.amazon.com/Family-Gene-Mission-Inheritance-Hopeful/dp/0062378899/ref=cm_sw_em_r_dp_w_dcP_PRWTyb8SE50F3_lm


KatValeska



Joined: 04 Oct 2004
Posts: 1814
Location: Colorado


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PostPosted: 03/02/17 10:30 pm    ::: Reply Reply with quote

The Linder sisters are sharing their story for the first time, because they hope to spread awareness of genetic disease in general, and draw attention to their own deepening sickness in particular. But at a time when religious conservatives, techno-skeptics, and old guard right-to-lifers have launched a new effort to stem the spread of genetic science, they also see the need to speak up for the technologies that have gotten them this far.

“It’s genetics, not eugenics,” says Joselin, pushing back against the e-world favored by critics.

My heart goes out to your friends. Technology is neutral. This seems an intelligent pursuit by brave and thoughtful sisters. Thanks for sharing that excellent article.


CamrnCrz1974



Joined: 18 Nov 2004
Posts: 16691
Location: Phoenix


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PostPosted: 03/08/17 2:40 pm    ::: Reply Reply with quote

New York Post: "This Woman Knows How She Will Likely Die

Quote:
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:


http://nypost.com/2017/03/05/what-its-like-to-live-with-a-mysterious-killer-gene-disorder/


GlennMacGrady



Joined: 03 Jan 2005
Posts: 4018
Location: Heisenberg


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PostPosted: 03/08/17 6:41 pm    ::: Reply Reply with quote

Thanks for sharing this poignant story.
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