Vim & Vigor - Fall 2018 - University of Virginia - 7

When Karen Ramsey shared her story, she knew she
might not live to see it published. She passed away
April 30 but, as she wished, we share her story to continue
her legacy to spread awareness about an often overlooked
cancer-causing disease. BY HOLLY FORD

I
Karen
gracefully
coexisted
with cancer
while living
a long and
joyful life.

n 2011, the average life expectancy for a female patient with von
Hippel-Lindau (VHL) disease was
48 years of age. Karen Ramsey was
diagnosed at age 50.
"I was late to the party," said
Ramsey. "I was two years older than
the average age of survival. To have to
share that news with my family was
heart-wrenching."
VHL is a rare genetic condition that
leads to the development of both benign
and cancerous tumors throughout the
body. Where these tumors appear varies
from patient to patient, making VHL a
difficult condition to diagnose.

Pushing for ANSWERS

Ramsey had had no major health problems prior to her diagnosis. She was an
athlete, a longtime gymnast, a jogger
and a black belt in tae kwon do. "I was
surprised something was wrong because
I had no symptoms," she said. But an
ultrasound test revealed stage 4 kidney
cancer. And that wasn't all. Ramsey also
had a rare adrenal gland issue called a
pheochromocytoma. Paired together,
these were telltale signs of VHL, which
Ramsey discovered after researching her diagnosis. So she pushed for
more testing.
"I did not get a lot of support from
my doctors in Phoenix, but I had
my research," she said. "So I had my
blood drawn and sent it off myself for
genetic testing."
VHL is caused by a flaw in a single
gene and is typically passed down

through families. However, it can
appear sporadically as well, according
to University of Virginia Health System
neurosurgeon Ashok R. Asthagiri,
MD. Fortunately for Ramsey, she was
the only one in her family with the
genetic mutation.
"My parents and siblings were tested,
and no one had the mutation. My kids
had a 50-50 chance of getting the disease, but both my son and daughter
were negative," she said. "I'm very fortunate it begins and ends with me."

Taking INITIATIVE

Knowing her family was unaffected gave
Ramsey a sense of relief. But knowing
there were others in her community and
beyond who might have VHL and be
unaware set her into action.
"Approximately one-quarter of
patients with VHL don't know they have
the condition," says Dr. Asthagiri. "They
are being treated by multiple providers who haven't put the puzzle pieces
together yet. That's a problem because
they may not be diagnosed until their
cancer has reached the later stages and
is more difficult to treat. This delayed
diagnosis has important implications for
family members as well. "
Forced to give up a career she loved
in leadership development and strategic planning for nonprofits, Ramsey
channeled all of her energy into volunteering for the VHL Alliance, an
organization dedicated to raising awareness about the disease; educating, supporting and improving quality of life
FALL 2018

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