t
he 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
p a n t s. M y l o n g t im e b oy f r i e n d
(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
t o a n in c re a s e d r is k o f l a t e - o ns e t
Alzheimer’s disease. The
average person has up to a
12 percent chance of developing
Alzheimer’s—but for me, my
c h a n c e s k y ro c ke t s t o 20 0
percent.
Weirdly, I felt a sense of calm
wash over me. I finally knew.
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 daugh-
ter caring for her sick mom.
Now, I might be the sick per-
son myself. Not that I’d ever be
a b l e t o t e l l my m o t h e r, w h o
insisted she doesn’t want to know
if she carries the APOE4 gene.
To h e r, a p o sit i ve re s u l t wo u l d b e
a death sentence.
But I *could* tell my boy-
friend. “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 anx-
ious about the test, but he was
c o n f us e d a b o u t w h a t my re s u l t s
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.
H e s t a ye d q ui e t, t h e n eve n t u -
ally said, “I guess it makes sense.
Yo u’re a l wa y s l o sin g yo u r keys.”
I replied, “Hope you’re ready to
change my diapers!”
I spent the next few months
researching the best ways to pre-
vent the disease. I was already
wading through medical
re s e a rc h f o r my jo b, s o it did n’t
f e e l s o s t ra n g e t o c o m b t h ro u g h
studies. It did seem, though, like I
was the only one in my 20s look-
ing for answers. I stumbled onto
Alzheimer’s forums and lurked
on discussion boards where peo-
p l e, m o s t l y in t h e ir 50 s, w ro t e
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 Alzheim-
er’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 any-
thing about.
M y f r i e n d s did n’t re a l l y u n d e r-
stand 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
t o hit t h e g y m, d e a l w it h my m e n -
tal health, and eat less frozen
p iz z a. A n d eve n t h o u g h my m o m
refuses to get tested, my grand-
ma’s condition has made an
im p a c t o n h e r. T h e l a s t t im e I
visited, I cracked open our old
junk-food drawer and was
shocked to see that the chips had
been replaced with vitamin bot-
tles. I have no idea what the
future holds, but I feel optimistic
for us both.
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.
The truth
a b o u t
these tests
Curious about
your predispo-
sition to cer-
tain diseases?
Direct-to-
consumer
tests like
23andMe,
which costs
$199, scan
your spit for
particular
genetic mark-
ers for condi-
tions like
late-onset
Alzheimer’s,
Parkinson’s
disease, and
breast and
ovarian can-
cers. But they
can’t check for
everything—
and even
though results
are likely
accurate,
they’re not
guaranteed.
And in most
cases, there
won’t be an
MD or a
genetic coun-
selor on
standby to
help if you get
distressing
news. So, bot-
tom line: It’s
up to you, but
know you also
have the
option of test-
ing through
your regular
doctor.
SOURCE: AMY STURM, PRESIDENT OF THE
NATIONAL SOCIETY OF GENETIC COUNSELORS
October 2019 Cosmopolitan 103
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