PKD Life - Spring 2020 - 17


Gillian Kolodny, 43,
Mount Sinai, New York
As a volunteer coordinator
for the Long Island Chapter
of the PKD Foundation,
Gillian Kolodny feels strongly
about promoting awareness
of the disease.
Her family's journey with
PKD began when her grandfather died at age 49. "We didn't
find out until he was close
to dying that it was due to
kidney disease, and we didn't
know anything about it being
genetic," Kolodny says.
Her mother found out she
had PKD during her second
pregnancy. That's when the
family started to learn more
about the disease.
Eventually, Kolodny's mother
needed dialysis, so Kolodny and
her three siblings were tested
to see if they could be donors.
All four have PKD.
"I didn't speak about it
openly at that point," Kolodny
says. But in 2003, while caring
for her mother, she and her sister went to a PKD Foundation
meeting on Long Island. "From
then on, I became pretty open
about it."
Kolodny began promoting
the Chapter and started an
annual Walk for PKD to raise
money. Her Chapter was also
instrumental in creating the
first PKD Awareness Day, which
is now an international event.
Kolodny acknowledges it can
be a big decision to disclose
your PKD diagnosis. "For
me personally, it's been
better to be open and
an advocate. I've chosen
to help bring awareness
and to focus on funding
needed for research so the
next generation has a better chance to beat PKD."

Open to Sharing

For Kathie Quinn, the main
reason for not disclosing
her PKD was not wanting
to be identified as having a
pre-existing condition when
she tried to get health or
life insurance.
Quinn's mother found
out she had PKD at age 76
while undergoing an MRI for
another reason; at 81, she had
to go on dialysis.
Quinn and her brother tried
to reassure themselves that
because they both resembled
their father, they probably
didn't have PKD. But at age 45,
Quinn was in a similar situation as her mother had been.
"I was getting a sonogram
for another reason, and I
looked at the screen and
saw what looked like Swiss
cheese," she says. The technician blurted out that Quinn's
kidneys and liver were full of
cysts. "I was upset about having what I assumed was PKD,
but I didn't have any symptoms, so I did not want to be
officially diagnosed."
"Once I went to a support
group, and one woman told
me she was paying almost
double her house payment for
her health insurance because
of her PKD, so I was very careful who I told," she says.
Quinn was finally diagnosed once she saw a
nephrologist after enrolling
in Medicare. "At that point,
I was out of the closet," she
says. But when she knew she
would soon need a kidney,
she paid out of pocket to have
her son's genes tested so his
insurance wouldn't know.
Quinn's brother-in-law was
her kidney donor.

Focused on Advocacy

Insurance Concerns

Kathie Quinn, 71,
Kansas City, Missouri

Jacque English, 40,
Oconomowoc, Wisconsin
Jacque English was 24 when she
was diagnosed with PKD, and she
has chosen to be open with others
about her disease.
"For better or worse, my diagnosis is part of who I am," she says.
"Sharing who we are with others
involves being a little vulnerable,
and that can be scary. Fortunately, it's been my experience
that people are mostly curious
whenever I've shared my diagnosis. They have lots of questions
about how I'm feeling, the prognosis, and what kind of treatment
options exist."
"I stay as informed as I can
through my local PKD Chapter and
resources like the PKD Foundation
so I'm able to accurately answer
people's questions," she adds.
"I think that goes a long way in
helping people understand what
it means when I say I have PKD."
English has two daughters,
ages 3 and 5, who she knows have
a 50% chance of having PKD. She
and her husband plan to wait
until the girls are older to share
with them that they may have
the disease.
"We don't think they could
truly understand the implications right now-and if they
did, it might unnecessarily
worry them," English says. "The
longer I'm a parent, the more
I realize there are so many
things you simply can't plan for.
You just have to take life as it
comes sometimes."



Find answers to the most commonly asked
questions about PKD at

P K D C U R E .O R G

PKD_SP20_16-17_Feature_ToDiscloseOrNot.indd 17


3/30/20 11:23 AM http://www.PKDCURE.ORG

PKD Life - Spring 2020

Table of Contents for the Digital Edition of PKD Life - Spring 2020

PKD Life - Spring 2020 - Cover1
PKD Life - Spring 2020 - Cover2
PKD Life - Spring 2020 - Contents
PKD Life - Spring 2020 - 2
PKD Life - Spring 2020 - 3
PKD Life - Spring 2020 - 4
PKD Life - Spring 2020 - 5
PKD Life - Spring 2020 - 6
PKD Life - Spring 2020 - 7
PKD Life - Spring 2020 - 8
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PKD Life - Spring 2020 - Cover4