Mystery Disease Strikes Just One Family on the Planet

Joselin, Hilary Linder determined to wipe out strange genetic ailment
By Evann Gastaldo,  Newser Staff
Posted Feb 8, 2014 1:30 PM CST
Mystery Disease Strikes Just One Family on the Planet

In the late 1980s, William Linder, a healthy 40-year-old doctor, came home from a vacation fatigued and with swollen legs. By 1996, he was dead, with the cause officially listed as "unknown." The years in between were full of gruesome symptoms: Swelling squeezed some of his veins so they almost closed, while others filled up with extra blood and almost burst. His organs nearly fused as his body swelled. A creamy white fluid had to be pumped out of his body by the liter. Eventually, a geneticist found a gene mutation—a seemingly tiny, single-gene error that NBC News compares to a "one-letter typo"—that seemed to be at the root of the disease. She did extensive research and could find no other cases—but the Linder family eventually realized the same mysterious ailment had killed four other ancestors. The geneticist eventually determined the founder was William Linder's grandmother, which made the new disease shockingly "young"—and convinced the Linders to do all they can to keep the illness from hurting another family.

William Linder's daughters, Joselin and Hilary, are, as far as they know, the only two people in the world living with the disease—and they're committed to halting its spread. They've had three abortions over fears related to passing along the disease, and Hilary had her twin daughters only after undergoing a form of IVF that tests embryos for disease and implants only healthy ones. "What if the first carriers of every disease knew it and chose not to pass it on?" writes Tony Dokoupil for NBC. "Would we have Cystic Fibrosis or Huntington’s?" But controversy swirls around what the Linders are doing: Some states have banned abortions based on genetic ailments, and critics say the type of IVF Hilary used could eventually be used to screen out all sorts of characteristics. Click for NBC's full piece. On her website, Joselin says, "I’ve been trying to get a platform for this story for five years ... because my sister and I are in the fight of our lives for resources and attention." (Read more genetics stories.)

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