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CamrnCrz1974
Joined: 18 Nov 2004 Posts: 18371 Location: Phoenix
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Posted: 03/01/17 12:59 pm ::: To Catch a Killer Gene: Sisters Race to Stop Mystery Disease |
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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:
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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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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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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
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CamrnCrz1974
Joined: 18 Nov 2004 Posts: 18371 Location: Phoenix
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Posted: 03/01/17 12:59 pm ::: |
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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
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KatValeska
Joined: 04 Oct 2004 Posts: 1830 Location: Colorado
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Posted: 03/02/17 10:30 pm ::: |
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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.
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CamrnCrz1974
Joined: 18 Nov 2004 Posts: 18371 Location: Phoenix
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GlennMacGrady
Joined: 03 Jan 2005 Posts: 8228 Location: Heisenberg
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Posted: 03/08/17 6:41 pm ::: |
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Thanks for sharing this poignant story. |
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