In This Family, Destiny Is a Flip of the Coin

All have a 50-50 chance of early dementia diagnosis, as do their children
By John Johnson,  Newser Staff
Posted Jul 23, 2023 4:20 PM CDT
For Members of This Family, Destiny Is a Coin Flip
   (Getty / Forclick Studio)

It was Barb, the youngest in a Pittsburgh family of nine, who first suspected something had gone genetically haywire in her family. As Robert Kolker explains in a New York Times Magazine story, she watched as her mother seemed to unravel mentally at a relatively early age, then sisters Christy and Mary, followed by Jenny and Peggy. It wasn't until 2008 that doctors at the Mayo Clinic finally figured out that the family had a mutation of the tau brain protein. The upshot of that discovery: Everybody in the family has a 50-50 chance of developing the rare condition of frontotemporal dementia, or FTD. If Americans are familiar with the condition these days, it may be because Bruce Willis has the same diagnosis, though it's unclear if his is inherited.

By the time of the discovery, all but one of the eight siblings had children, and all of those children have the same 50-50 risk. Kolker's story explores the wrenching decision family members face: whether to get tested in their 20s or 30s to see on "which side of the coin flip they landed." Some opt to do so, while others would rather not know. As for Barb, she decided to get tested just before her 40th birthday in 2016—but then couldn't bear to go back for the results. She remained in the dark for a year, until somebody breached protocol and sent her a letter with the test results, writing that she should know. As it turned out, Barb and her children were in the clear. "It didn't ever occur to me," she recalls to Kolker, "that I might get good news." As the story details, not all such reveals were happy ones. Read the full story. (Or check out other longform stories.)

Stories to sink your teeth into.
Get our roundup of longform stories every Saturday.
Sign up
Get the news faster.
Tap to install our app.
Install the Newser News app
in two easy steps:
1. Tap in your navigation bar.
2. Tap to Add to Home Screen.