44 THE QUEENS COURIER • WELLNESS • SEPTEMBER 19, 2019 FOR BREAKING NEWS VISIT WWW.QNS.COM
wellness
How the Internet Can Help Prevent Alzheimer’s Disease
Over the past 10 years, researchers
have learned Alzheimer’s disease starts
much earlier than the onset of symptoms
- 10-20 years before an individual, family
member or friend might notice the signs
of the debilitating disease.
According to the Alzheimer’s
Association, 5.5 million Americans, of
all races and ethnicities, age 65 and older
currently live with Alzheimer’s disease,
which is expected to grow to more than 7
million people by 2025.
The first-of-its-kind Alzheimer
Prevention Trials Webstudy (APT
Webstudy), funded by the National
Institutes of Health, aims to increase the
pace of research by enlisting thousands
of healthy volunteers who can quickly be
enrolled in clinical trials focused on preventing
Alzheimer’s disease. Enrollees
in the APT Webstudy can use the internet
to help stop the disease while being
alerted to changes in their own memory
function.
“In order to change the lives of the
numerous people and their loved ones
who will be aff ected by Alzheimer’s, we
need everyone to get involved with prevention
eff orts,” said Paul Aisen, MD,
co-principal investigator of the APT
Webstudy. “Th e bigger the army of volunteers,
the faster we can work to prevent
this terrible disease.”
Volunteers can access the Webstudy
when and where it is convenient for
them, such as on their computer or tablet,
or even a public library; anywhere they
can access the internet. Volunteers participate
in regular online memory testing.
If there is a change in memory function,
eligible volunteers are alerted and may
be invited to a no-cost, in-person evaluation
at one of the research sites across
the country.
“Th is is an opportunity for everyone to
help future generations avoid the suff ering
caused by Alzheimer’s,” Aisen said.
“With enough volunteers, we will be one
step closer to seeing the fi rst Alzheimer’s
survivor.”
Researchers are looking for a diverse
group of people ages 50 or older who
have normal thinking and memory
function. Volunteers must be willing to
answer a few questions about their family
and medical history and provide information
about their lifestyles. Volunteers
will take online memory tests every three
months, each one about 20 minutes long.
If you are interested in participating,
visit aptwebstudy.org to learn more.
Courtesy Family Features
Photo courtesy of Getty Images
Man’s quest for answers about rare disease
uses genealogy to unlock secrets from the past
When Greg fi rst learned about a rare
disease aff ecting his brother, he had no
idea that the illness would shortly come
to defi ne his own life, or that his search
for answers would take him on a journey
going back generations to his Irish
ancestors.
Greg grew up in an active family, and his
love of the outdoors carried on throughout
his life. But when the keen rock climber
started having nerve problems in both
wrists that made it diffi cult for him to grip
tightly, he knew he needed help. At fi rst,
he thought it was carpal tunnel caused
by the repetitive fl exing needed in the
sport. But aft er further testing, Greg was
diagnosed with hereditary ATTR amyloidosis
(hATTR) - the same disease that
had robbed his beloved older brother of
his independence, ability to function and
eventually, his life.
“I was absolutely devastated when they
told me I had what my brother had. At
fi rst, I just refused to accept it,” said Greg.
At the time, he didn’t know that hATTR
amyloidosis is hereditary and has a genetic
link. But with the support of his wife
and family, Greg vowed to do everything
he could to learn about the condition.
He consulted resources such as hATTR
Change the Course and learned that, in
people with hATTR, an abnormal protein
called amyloid builds up in multiple
organs of the body where it should not be.
Th is amyloid buildup causes these organs
to stop working normally. Symptoms of
hATTR are varied and include digestive
problems, as well as nerve damage that
can cause changes in balance and coordination.
“hATTR amyloidosis is a rare, and ultimately
fatal disease that oft en aff ects the
nerves, heart and kidneys,” said Daniel
Lenihan, M.D., professor of medicine
at the Washington University School of
Medicine in St. Louis and a world-renowned
expert on hATTR. “Th e condition
can have multiple symptoms that can
seem disconnected, and a genetic test can
confi rm diagnosis.”
More than 80 percent of rare diseases
like hATTR amyloidosis have a genetic
link, meaning they are passed down
through generations. Greg discovered that
hATTR amyloidosis is more common in
people with Irish, Portuguese, Japanese,
Swedish, French or West African ancestry.
Greg had always been proud of his Irish
roots, but he was shocked to uncover that
the disease may have impacted up to 600
people in his extended family, dating back
three centuries to when they came from a
small town in Northern Ireland. Knowing
that the disease could impact other family
members, Greg began to take a closer look
at his family tree. Discovering that his
grandmother had died young from symptoms
similar to his and his brother’s, Greg
began to read family journals and delve
deeper into the past.
“It’s amazing to me that this condition
has had such an impact across so many
generations of my family, and on other
families just like mine,” said Greg. “My
ancestors had no idea they were carriers
of this gene, but I’m grateful that we know
more about it today.”
“For the fi rst time, there are now treatment
options that can slow hATTR amyloidosis
with polyneuropathy from getting
worse, and the earlier it is diagnosed
the better,” said Dr. Lenihan. “Now, when
people are diagnosed with this condition,
they have choices in how to manage
their symptoms, so it’s more important
than ever for people who are at risk
to fi nd out whether they have the gene for
this condition.”
With treatment, Greg is doing much
better. “I’m a positive person, and I’m now
able to enjoy life just that little bit more
now that I know I’m doing everything I
can to fi ght this disease.”
Courtesy BPT
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