“I remember not being able to
pull any harder and feeling really
odd, like, How come I can’t
apply any pressure?” says Ms.
Cartwright, now 47. “I was still
keeping the rhythm up with my team, but [I was] feeling like I
couldn’t pull, and [I was] losing
my vision. Everything sort of
narrowed and went white.”
Ms. Cartwright was conscious
as the boat crossed the finish
line, but when she tried to
disembark, she found herself
unable to stand and fell into
her coach’s arms. St. John Ambulance volunteers working
at the event were unable to get
a heart rate because her heart
was racing so fast, and Ms.
Cartwright was rushed to the
hospital.
“I was really scared,” she says,
still emotional at the memory. “I
couldn’t see; I was blacking out.
And I remember them getting
me out of the ambulance, and I
didn’t want them to cut my crew
jacket off, because only varsity
got to wear the crew jacket. And
I had earned that, so they had to
take it [off ] over my head.”
At the hospital, Ms. Cartwright
was diagnosed with tachycardia
– a condition that occurs when
an abnormality in the heart
causes a faster than normal
heart rate. Though it would take
several years before she would
find out the underlying cause of
her heart condition, she was put
on a beta blocker and advised to
stop all competitive sports.
“In certain
inherited
cardiomyopathies, although sudden
death and
arrhythmias can
happen at any
time, they happen
more commonly
during physical
exertion.”
Dr. Danna Spears,
Cardiac Electrophysiologist
It was devastating news for an
elite athlete who had aspirations
of being selected for the Canadian Olympic rowing team.
“That was really challenging
for me because I was 20; I was
rebellious,” she remembers.
“I had a lot of episodes where
I would do some pickup
basketball or other activities that
would land me in the hospital.
I didn’t want to accept it, and
there was a lot of denial in
the beginning that this was as
serious as it was.”
Ms. Cartwright was diagnosed
in 1996 with arrhythmogenic
right ventricular cardiomyopathy
(ARVC), a condition in which
there is an abnormality in the
myocardium, the muscular wall
of the heart. ARVC is a genetic
condition, which means it gets
passed down from generation to
generation through mutations in
a single gene or a combination of
genes. (In Ms. Cartwright’s case,
ARVC was caused by a mutation
in the PKP2 gene, which she
suspects came from her father’s
side of the family.)
With ARVC, the proteins that hold the cells of the heart muscle together do not develop properly and are replaced with fatty
deposits. This causes abnormal heart rhythms that can increase the risk of sudden death.
“It’s a rare condition that
happens in about one in every 2,500 people,” says
Dr. Danna Spears, a Cardiac
Electrophysiologist at the
Peter Munk Cardiac Centre
(PMCC) and Ms. Cartwright’s
physician. “In certain inherited
cardiomyopathies, although
sudden death and arrhythmias
can happen at any time, they
happen more commonly during physical exertion. ARVC is one
of these inherited conditions
that we have good evidence
where it is actually made worse
by high-intensity physical
activity.”
To control her abnormal
heart rhythms, Ms. Cartwright
had an internal defibrillator
implanted. (“I’m on my fifth and
I’ve used them often,” she says.)
Though participating in rowing
was no longer possible after
her diagnosis, Ms. Cartwright
became a successful rowing
coach at Western, then at places
like Princeton University,
Harvard University, and
Boston University, as well as for
provincial and national teams in
Canada.
Then in 2014, Dr. Spears and
Dr. Heather Ross, a Cardiologist
at the PMCC, diagnosed Ms.
Cartwright with heart failure, a
result of the progression of her
ARVC. She will likely need a
heart transplant at some point
down the road.
“It was pretty shocking to hear,”
says Ms. Cartwright. “I think
when you get a diagnosis like
that, it can be an identity you
take on. And so I’ve tried to cope
with learning that about myself
by not saying, ‘I have heart
failure,’ but saying, ‘I want to be
the healthiest person with this
heart condition and keep this
so-called bad heart for as long as
I can.’ ”
One of Ms. Cartwright’s
current passions is the
Heather Cartwright Inherited
Cardiomyopathy and
Arrhythmia Project (CICAP), a
groundbreaking initiative she
founded with Dr. Spears and Dr.
Ross. The project, which was
established through a $500,000
gift from Heather, her sister
Meredith and brother Brian,
studies cardiac patients using
genetic testing and imaging
to identify genetic biomarkers
that could indicate causes
for cardiomyopathies that
run within families. CICAP also aims to create a registry of families with inherited
cardiomyopathies.
Dr. Spears says that Ms.
Cartwright’s support has
enabled them to create a large
database of families with
inherited cardiomyopathies and
arrhythmias, and offer extensive
screening to their relatives.
“When we’re able to identify
through a genetic test other
people who might be at risk –
the siblings and children of the
people who are affected – from
there we extend the screening.
We call it cascade screening,”
she says. Researchers can work
backward, looking for a parent
who is a carrier of the gene,
then look to grandparents and
great-aunts and great-uncles
to identify cousins and more
distant relatives who might also
be potentially at risk.
Dr. Spears says they also hope
to facilitate gene discovery
through CICAP because she
believes they’ve only seen the
“tip of the iceberg” when it
comes to the complexity of these
diseases.
“At the very beginning, very few
genes were identified to cause an
inherited and arrhythmogenic
cardiomyopathy. And now we
have many, many genes that
we know can cause this disease
that puts you at risk for dying
suddenly,” she says. “If we are
able to identify large families
who all have the same condition,
but conventional genetic testing
hasn’t found anything, then that
is when we embark on looking
for new genes because clearly
it’s there, and the genetic tests
we have today are limited by the
genes we know.”
Ms. Cartwright says one of the
reasons she founded CICAP was with the hope that it could help
prevent the deaths of young
people who don’t know they
have ARVC or other cardiac
diseases exacerbated by high intensity
exercise.
“Every time there’s an event
where there’s a young person
who collapses and dies, it
crushes me,” she says. “I was very fortunate with the first incident and the subsequent incidents
that I didn’t die. But there are
so many kids who are not as
fortunate.
“Over time, we might get to a
way to treat it and cure it. But
at this stage, we’re in life-saving
mode.”
