Vim & Vigor - Fall 2018 - University of Virginia - 8

A Comprehensive
Center for VHL

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other VHL patients so that they can also
be partners in managing their health,"
says Dr. Asthagiri. "As a patient liaison, she had an opportunity to provide
constructive feedback so that we better
understood what difficulties exist for
our patients and help us evolve and continuously improve."

Making a
LASTING IMPACT

While Ramsey was committed to fighting to improve care for other VHL
patients, she was also fighting for her
life. In her last months, she had as many
as 30 tumors throughout her body,
including her brain, kidneys, spine, pancreas, eyes, bones, liver and lungs. Last
year, a tumor penetrated her spinal cord
and the surgery to repair it impacted her
ability to walk. Each week, she visited
two to three different UVA specialists,
including an endocrinologist, ophthalmologist, oncologist, physical therapist
and others, and she took oral chemotherapy daily.
Despite her health challenges, she
remained "overwhelmingly positive,"
says Dr. Asthagiri.

"I've lived beyond projections because
I'm embracing every day," she shared
months before passing away. "My mantra is: 'I gracefully coexist with cancer
while living a long and joyful life.'"
Her greatest wish: to help others with
VHL live longer, fuller lives. "I'm hoping
I'm a dinosaur," she said. "I want to be
the last generation of patients who die
tied to VHL." ■
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and Cons
To learn more about the pros
and cons of genetic testing-
both clinical genetic testing
performed by a genetic counselor and direct-to-consumer
DNA tests you do at home-
visit Healthy Balance, the
UVA Health System blog, at
uvahealth.com/genetictests.

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for VHL patients; and advocating for
VHL research.
Ramsey chaired the VHL Alliance
Board of Directors for two years before
moving to Charlottesville. It was
through her work with the Alliance
that Ramsey discovered UVA and Dr.
Asthagiri. "We moved from Phoenix to
Charlottesville because of Dr. Asthagiri
and the Comprehensive Clinical Care
program at UVA," she said.
UVA is one of only a dozen designated
VHL Alliance Comprehensive Clinical
Care Centers in the U.S. It is a designation given only to those hospitals with
a demonstrated proficiency in providing high-quality, comprehensive care to
VHL patients.
"VHL may impact an individual's
life in many ways. At UVA, we offer
well-coordinated multidisciplinary
management that emphasizes close
surveillance and treatments that are
tailored to the needs of each individual
patient," says Dr. Asthagiri, director of
UVA VHL Comprehensive Clinical Care.
"As an institution, we are dedicated
to making forward movement to treat
this disease."
Dr. Asthagiri not only had Ramsey
as a patient, but he welcomed her as an
ally in his quest to better serve patients
with VHL. She was given the new role
of VHL Patient Liaison, making her a
direct link between the VHL Alliance
and UVA.
"Karen was unique in that she
understood her condition from both
a patient's and clinician's perspective.
This level of comprehension helped us
immensely in diagnosis, surveillance
and treatment of her disease manifestations. And she motivated us to educate

Karen Ramsey moved cross-country to be close to
experts in von Hippel-Lindau disease (VHL). Caused
by a genetic mutation, this condition leads to the
development of both benign and cancerous tumors
in the nervous system, kidney, pancreas, and adrenal
gland as well as other parts of the body. UVA is one
of only 12 Comprehensive Clinical Care Centers in
the U.S. for VHL. To earn this recognition, centers
must have previously been recognized as Clinical Care
Centers by the VHL Alliance and have demonstrated
"additional depth of expertise and experience treating
VHL and their dedication to a true team approach for
VHL patients," according to the VHL Alliance. Learn
more at uvahealth.com/vhlcare.
http://www.uvahealth.com/vhlcare http://www.uvahealth.com/genetictests
Table of Contents for the Digital Edition of Vim & Vigor - Fall 2018 - University of Virginia
