NEW YORK, NY / The New York Times / Health / June 2, 2010
By Pam Belluck
YARUMAL, Colombia — Tucked away on a steep street in this rough-hewn mountain town, an old woman found herself diapering her middle-age children.
At frighteningly young ages, in their 40s, four of Laura Cuartas’s children began forgetting and falling apart, assaulted by what people here have long called La Bobera, the foolishness. It is a condition attributed, in hushed rumors, to everything from touching a mysterious tree to the revenge of a wronged priest.
It is Alzheimer’s disease, and at 82, Mrs. Cuartas, her gray raisin of a face grave, takes care of three of her afflicted children.
One son, Darío, 55, babbles incoherently, shreds his socks and diapers, and squirms so vigorously he is sometimes tied to a chair with baggy blue shorts.
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A daughter, María Elsy, 61, a nurse who at 48 started forgetting patients’ medications, and whose rages made her attack a sister who bathed her, is a human shell, mute, fed by nose tube.
Another son, Oderis, 50, denies that his memory is dying, that he remembers to buy only one thing at a time: milk, not milk and plantains. If he gets Alzheimer’s, he says, he will poison himself.
“To see your children like this ... ,” Mrs. Cuartas said. “It’s horrible, horrible. I wouldn’t wish this on a rabid dog. It is the most terrifying illness on the face of the earth.”
For generations, the illness has tormented these and thousands of others among a sprawling group of relatives: the world’s largest family to experience Alzheimer’s disease. Now, the Colombian clan is center stage in a potentially groundbreaking assault on Alzheimer’s, a plan to see if giving treatment before dementia starts can lead to preventing Alzheimer’s altogether.
Most family members come from one Andes region, Antioquia. Geography, and Basque ancestry, have isolated people here, who call themselves paisas, countrymen. Over three centuries, many in this clan of 5,000 people have inherited a single genetic mutation guaranteeing that they will develop Alzheimer’s.
Large families, and intermarriage, have accelerated the spread. Mrs. Cuartas’s fourth debilitated child, in Medellín, Carlos Alberto Villegas, a former livestock trader and guitar serenader now often fed by baby bottle, married a distant cousin. His mother-in-law is an addled ghost; three of his wife’s 11 siblings, so far, are developing dementia.
With Alzheimer’s in both parents’ families, Mr. Villegas’s three children could face extraordinary risk. One, Natalia, 22, asks: “How long have I got, till I’m 35? There’s no way out.”
Memories begin failing in one’s 40s, occasionally as early as 32. By 47, on average, full-blown Alzheimer’s develops.
Their form of Alzheimer’s, early-onset, was once considered too different to provide clues about far more common late-onset Alzheimer’s, which has unknown causes and primarily affects people over 65.
But it turns out that both forms produce nearly identical brain changes and symptoms. Now, scientists will test as-yet-unproven treatments on Colombians genetically destined for Alzheimer’s but not yet showing symptoms. They will give a to-be-determined drug or vaccine and see if it prevents memory loss or brain atrophy. If their disease can be halted, that could generate treatments to protect millions worldwide from common Alzheimer’s.
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