Vim & Vigor - Winter 2016 - University of Virginia - 55


UVA is one of 13
centers in the U.S. that
participate in the
national FMD registry

YOU'RE NOT

ALONE
Living with a rare disease can be scary
and isolating, but finding support from
others can offer hope BY KAREN DOSS BOWMAN

PHOTO BY JACKSON SMITH PHOTOGRAPHY

A

s an account manager for
a specialty pharmacy, Liz
Amos, RN, travels throughout the Mid-Atlantic region
helping people with rare pulmonary
diseases. Knowing how isolated her
patients feel, Amos sought her own support network when she was diagnosed
with fibromuscular dysplasia, or FMD,
a vascular disease.
"You really feel alone when you
have a rare disease," says Amos, 53,
of Centreville, Va.
Amos found hope and inspiration
through the Fibromuscular Dysplasia
Society of America, an advocacy group
that promotes FMD awareness, education and research. She belongs to
the organization's online FMD Inspire
Support Group, a forum for patients,

families and caregivers to share information, resources and encouragement. Amos has connected with FMD
patients worldwide.
"I just feel like I'm not alone anymore,"
says Amos, who is trying to establish
a face-to-face support group at UVA.
"When I was first diagnosed, this support wasn't available. It's tremendous
how this online support group has
opened my world, in terms of reaching
out to other people."

A Medical Mystery

The first sign of FMD appeared when
Amos was helping a patient at UVA
Health System: Part of a finger on
her left hand had turned black. Amos
went to the Emergency Department to
have it checked out. A series of tests,

including an arteriogram (an X-ray of the
arteries), revealed that she had FMD, a
condition characterized by abnormal cell
development within the artery walls. The
affected arteries may develop deformities,
including narrowing, beading (like a pearl
necklace) or bulging. As a result, people
with FMD often develop blood clots, like
the one in Amos' finger. That puts FMD
patients at a higher risk of stroke and also
might lead to serious complications such
as artery tears or aneurysms (ballooning
or weak areas).
After the initial diagnosis, Amos' condition was quiet for several years until
2013, when she developed another blood
clot in her hand. She sought help at an
emergency department near her home
in northern Virginia and was alarmed to
find doctors doing a Google search on
her condition.
"That was not reassuring," Amos says.
Knowing from her sister, a nurse at
UVA, that UVA offers expertise in caring for FMD patients, Amos made the
trek to Charlottesville to meet with
WINTE R 2016

55



Table of Contents for the Digital Edition of Vim & Vigor - Winter 2016 - University of Virginia

Contents
Vim & Vigor - Winter 2016 - University of Virginia - Cover1
Vim & Vigor - Winter 2016 - University of Virginia - Cover2
Vim & Vigor - Winter 2016 - University of Virginia - Contents
Vim & Vigor - Winter 2016 - University of Virginia - 2
Vim & Vigor - Winter 2016 - University of Virginia - 3
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Vim & Vigor - Winter 2016 - University of Virginia - 55
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Vim & Vigor - Winter 2016 - University of Virginia - Cover3
Vim & Vigor - Winter 2016 - University of Virginia - Cover4
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