I Tested Positive for the Alzheimer’s Gene at Age 26
The day I got my genetic test results, I ignored them. I came home from work and put on a big T-shirt and fuzzy pajama pants. My longtime boyfriend (now fiancé) cooked dinner. I didn’t even mention that the email from 23andMe was sitting unopened in my inbox. I wanted to wait until I was alone, so I could process whatever the truth was by myself.
When I finally worked up the courage to open my laptop, my screen confirmed what my intuition already told me: I have the APOE4 gene that’s been tied to an increased risk of late-onset Alzheimer’s disease. The average person has up to a
12 percent chance of developing Alzheimer’s—but for me, my chance skyrockets to 200 percent.
Weirdly, I felt a sense of calm wash over me. I finally knew.
Facing a Familiar Disease
In school, I’d worked as an assistant in a nursing home, where many patients were in the last stages of Alzheimer’s. Most of them couldn’t communicate or even get out of bed. And then, before I began my graduate degree, my grandmother was diagnosed with the disease, just as her mother had been before I was born.
In the beginning, my grandma would forget to turn off the stove or wander outside in the middle of the night. As she got worse, she got angry and moody. I heard her yell for the first time in my life. I watched my mom take care of her and worried: One day, that could be me, a daughter caring for her sick mom.
Now, I might be the sick person myself. Not that I’d ever be able to tell my mother, who insisted she doesn’t want to know if she carries the APOE4 gene. To her, a positive result would be a death sentence.
Finding My New Normal
But I *could* tell my boyfriend. “I have the gene,” I said bluntly, after I walked back downstairs and sat next to him on the couch. He knew I’d been anxious about the test, but he was confused about what my results meant, and he didn’t know what to say. I explained that I had a higher risk for Alzheimer’s than most people, but this didn’t mean I’d definitely get sick.
He stayed quiet, then eventually said, “I guess it makes sense. You’re always losing your keys.” I replied, “Hope you’re ready to change my diapers!”
I spent the next few months researching the best ways to prevent the disease. I was already wading through medical research for my job, so it didn’t feel so strange to comb through studies. It did seem, though, like I was the only one in my 20s looking for answers. I stumbled onto Alzheimer’s forums and lurked on discussion boards where people, mostly in their 50s, wrote about going on low-carb diets, playing Sudoku, and working out more to keep their minds sharp.
Since research suggests that eating healthily and exercising could prevent or delay Alzheimer’s, I met with a nutritionist, who had me avoid processed stuff and focus on whole foods. I hired a personal trainer, and I found a therapist to help me deal with the intense anxiety I had felt my entire life but never done anything about.
Overcoming the Angst
My friends didn’t really understand why I was making such a big deal out of something that might not affect me for literally decades. I felt isolated. But I also knew I was doing the right thing for my future self.
Now, walking around with the knowledge that I have APOE4 feels like a weight I carry every second. At least it motivates me to hit the gym, deal with my mental health, and eat less frozen pizza. And even though my mom refuses to get tested, my grandma’s condition has made an impact on her. The last time I visited, I cracked open our old junk-food drawer and was shocked to see that the chips had been replaced with vitamin bottles. I have no idea what the future holds, but I feel optimistic for us both.
*Name has been changed.
The truth about these tests
Curious about your predisposition to certain diseases? Direct-to-consumer tests like 23andMe, which costs $199, scan your spit for particular genetic markers for conditions like late-onset Alzheimer’s, Parkinson’s disease, and breast and ovarian cancers. But they can’t check for everything—and even though results are likely accurate, they’re not guaranteed, according to Amy Sturm, president of the National Society of Genetic Counselors.
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