Haunted by a Gene: For the first time, Nancy Wexler reveals that she has inherited the disease she has spent her life studying.

Tuesday, March 10, 2020

The New York Times, by Denise Grady

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Year after year for two decades, Nancy Wexler led medical teams into remote villages in Venezuela, where huge extended families lived in stilt houses on Lake Maracaibo and for generations, had suffered from a terrible hereditary disease that causes brain degeneration, disability and death. Neighbors shunned the sick, fearing they were contagious.“Doctors wouldn’t treat them,” Dr. Wexler said. “Priests wouldn’t touch them.” She began to think of the villagers as her family, and started a clinic to care for them.“They are so gracious, so kind, so loving,” she said.

Over time, Dr. Wexler coaxed elite scientists to collaborate rather than compete to find the cause of the disorder, Huntington’s disease, and she raised millions of dollars for research.

Her work led to the discovery in 1993 of the gene that causes Huntington’s, to the identification of other genes that may have moderating effects and, at long last, to experimental treatments that have begun to show promise.

Now, at 74, Dr. Wexler is facing a painful and daunting task that she had long postponed. She has decided it’s time to acknowledge publicly that she has the disease she’s spent her life studying and that killed her mother, uncles and grandfather...