When You Know You Might Forget Everything
New York magazine|July 15-28, 2024
LIVING WITH THE ALZHEIMER'S GENE.
AMELIA SCHONBEK
When You Know You Might Forget Everything

IN 2017, 23andMe began offering tests for the genetic risk of developing certain health conditions like celiac disease, Parkinson's, and late-onset Alzheimer's. The Alzheimer's test will tell you if you have the gene variant APOE4, which means you have an increased likelihood of developing the disease. One in four people carry a single copy of the gene, but 2 to 3 percent of the population have two copies-one from each parent-and have a much higher probability. As with all of 23andMe's upcharged "Health Predisposition Reports," the sell on it was self-empowerment: Once you know, you can plan, allowing you to take charge of your well-being.

Except most experts don't recommend that you test for APOE4 status. There's no cure for Alzheimer's disease and no surefire way to prevent it. Many people who find out they have two copies of APOE4 from 23andMe are left only with profound anxiety.

Not taking the test in a clinical setting means that when the results come in, there is no doctor or counselor present to help process them or explain what can even be done with the information. Instead, there's the internet: In Facebook groups and Reddit forums, APOE4/4's, as they call themselves, try to help one another through their doom spirals. They parse scientific studies on the links between exercise and cognition and theorize about the protective benefits of fish-oil supplements and cooking with saffron.

"I AM OPTIMISTIC, BUT I HEAR THIS CLOCK TICKING IN THE BACK OF MY HEAD."

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