Vim & Vigor - Winter 2017 - University of Virginia - 8

20 pills a day to keep her body functioning properly. She had to quickly learn
how to navigate an entirely different
life, one full of limitations, rules to follow and symptoms to bear. "There were
some dark days," she admits. "You question, 'Why did this happen to us?'"
She might have been consumed by the
whys and what-ifs. But with David's support, Angela accepted that she couldn't
change her condition. She decided to
change her outlook instead.
"He is the one who keeps me moving forward. We had dreams of the
white picket fence and 2.5 kids, but that
wasn't God's plan for us," she says. "We
realized that we still have each other,
and that's what's important. As long as
we stay positive and put our faith in the
doctors, we'll be OK."
Now in their 40s, the couple have
adapted to the demands and limitations
of Angela's illness. They've found their
new normal: traveling to car shows,
building a home by hand and spending
time with family and friends. "We live
each day like it's our last. I do get tired,
but I push through," says Angela. "I dig
deep because the reward is worth it."
"A lot of people would have given
up and let their situation dictate how

life is going to be," says David. "But
not Angie. It doesn't matter how many
hospital stays or what tests need to be
run next, she gets back up, knocks the
dust off and meets life head on time and
time again."

Backed by a Team

David and Angela now make the oneand-a-half-hour drive to UVA every two
to three months. There, Angela sees a
multidisciplinary team of specialists,
including Okusa, her nephrologist,
as well as a cardiologist, hematologist, rheumatologist and others all
working together to manage her complex condition.
"After all of these years, we still have
some of my original doctors," says Angela.
"They are like family to us. They're not
just doctors. They saved my life."
Okusa, however, credits Angela's
progress to her own perseverance.
"There are things we deal with as physicians initially, but Angela's positive outcome is a testimony to her commitment
to her health-her healthy lifestyle, her
upbeat attitude and compliance with
medications. She is in charge of her life.
If it weren't for her resolve, she wouldn't
be here today." ■

SIMPLIFYING THE PATIENT
Beyond the physical and emotional demands of living with a
chronic illness, often it is the logistics of managing disease-the
medical bills, prescription refills and appointment scheduling-
that are the most stressful. Fortunately, technology is helping
simplify this aspect of the patient experience.
A majority of hospitals, including University of Virginia Health
System, have adopted electronic medical record systems, which
give patients a direct link to their providers and their health
records. For Angela Hurt, who requires consistent follow-up care
by a team of specialists to treat a rare autoimmune disorder, the
UVA MyChart® system has made all the difference.
"This system wasn't available when I was diagnosed 20 years
ago," she says. "Now I can just go online to view lab results and
leave messages for my doctors. It's made it much easier for me
to stay on top of my care."

8

W IN TER 2017

SOCIAL MEDIA

Another Voice
for Those with
Rare Diseases
Shira Strongin was only a
child when she learned she
had Ehlers-Danlos syndrome,
a disease that causes chronic
pain-or, as Shira describes it,
"a million suns burning under
your skin." A unique procedure
offered by a UVA neurosurgeon
brought some relief. She also
copes with her illness through
her blog, Sick Chicks, which
has gained a following on social
media. She's put her fame to
good use by lobbying Congress
for legislation on medication
reform and even helped to pass
The 21st Century Cures Act,
which set aside funding for
"discovery, development and
delivery of 21st-century cures."

EXPERIENCE

MyChart provides UVA patients personalized and secure
online access to portions of their medical records. They can log
on any time to:
Request appointments
View test results
Request prescription refills
Pay one bill for hospital, physician and lab charges
Another online tool, MyVue, is a free and secure way to view, print
and save radiology scans and images. (Please note: Patients need
to sign up for both MyChart and MyVue.)To learn more, go to
uvahealth.com/mychart.


http://www.uvahealth.com/mychart

Table of Contents for the Digital Edition of Vim & Vigor - Winter 2017 - University of Virginia

Contents
Vim & Vigor - Winter 2017 - University of Virginia - Cover1
Vim & Vigor - Winter 2017 - University of Virginia - Cover2
Vim & Vigor - Winter 2017 - University of Virginia - Contents
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Vim & Vigor - Winter 2017 - University of Virginia - Cover3
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