• By Dana Sparks

In the Loop: Rare disease takes 12 lives and inspires family members to find a cure

June 12, 2018

out of focus image of a hospital hallway with medical staff pushing a patient on a gurneyNeurologists at Mayo Clinic were able to put a name to the mystery disease that had taken the lives of a dozen of Rachelle Dixon's relatives, and now Rachelle can help others with the condition.


First it took her great-grandfather, then her grandfather. And when Rachelle Dixon was a teenager, it came for her aunt and mother, too — a mysterious disease that marched through generations, causing hearing loss, nerve damage, dementia and an early death. "No one knew what was causing it," reports KPIX TV "or who would get it next."

Experts at medical centers near the family's San Francisco-area home were stumped. "There was no diagnostic test for a mystery illness, no support groups to turn to for help, and no medical advice on what to do next," KPIX reports. It felt, Rachelle writes in The Mighty, like "a genetic version of Russian roulette." Read the rest of the story.
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This story originally appeared on the In the Loop blog.

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