DATE: October 22, 2026 at 04:30AM
SOURCE: STAT NEWS NEUROSCIENCE
TITLE: Opinion: The inherited disease my family called ‘it’ had a name, which changed everything
URL: https://www.statnews.com/2026/10/22/rare-disease-family-name-fenib-personal-essay/?utm_campaign=rss
The disease didn’t have a name in our house. It had descriptions: the way her hands shook or she lost her words midsentence. The way she could be fully present at breakfast then somewhere unreachable by dinner.
And it had a history. My grandmother had died at 29 of what we believed was something similar, my mother had been symptomatic before I was old enough to form the question, my older sister would be told at 26 that she had it, too. What the disease had in our house was a pronoun. “It.” As in, “it got worse over the winter.” As in, “your sister might get it.” As in, “we don’t know much about it.”
Read the rest…
URL: https://www.statnews.com/2026/10/22/rare-disease-family-name-fenib-personal-essay/?utm_campaign=rss
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