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60 August 28 • 2014
JN
Ruthan Brodsky
Contributing Writer
he symptoms started in the
summer of 2007. There was
swelling around her extremities
and she was short of breath. Her doc-
tors performed tests but didn't have a
diagnosis.
'Although it appeared to be some
kind of autoimmune disease, the
symptoms persisted until one morning
in December I was so short of breath
and swollen that I couldn't stand up
to make an egg," said Anita DeVine of
Bloomfield Township. "I went to the
emergency room at Beaumont Hospital
where they admitted me to the hospital
with high blood pressure, which I never
had before, and shortness of breath. I
stayed at Beaumont for one week dur-
ing which my heart and lung function
declined further."
DeVine transferred to the University
of Michigan Hospital in Ann Arbor suf-
fering from multiple organ failure; she
remained there for six weeks. When her
kidneys also started to fail she went on
dialysis.
"During my first few weeks at U-M
Hospital, my condition worsened:' she
recalled. "My heart, kidney and lung
functions remained compromised and
my blood needed to be filtered through
a process called plasmaphoresis because
there was no definitive diagnosis. One
night, I had a severe gastrointestinal
bleed that required transfusions.
"To make matters worse, my platelets
had decreased so much that my blood
wouldn't clot and I didn't think I'd sur-
vive. I had lost 35 pounds and was so
weak that I needed help to turn over in
bed. My family was called to come to
my bedside to say their goodbyes"
After three weeks at the U-M
Hospital, she was diagnosed with Acute
Scleroderma Renal Crisis, an autoim-
mune disease whose symptoms typically
include some or all of the following:
sensitivity to cold in extremities, thick-
ening of the skin, shortness of breath,
difficulty swallowing, joint stiffness and
pain, and damage to internal organs.
"I am so lucky I'm not alone:' DeVine
said. "My family and friends were very
supportive. While in the hospital, my
husband and children rotated staying
with me through the night. The night
of the severe bleed, I told our daughter,
Alison, I wasn't feeling well and she
insisted on having a doctor examine me
before the scheduled rounds. She found
a doctor quickly,which was important
because my hemoglobin count was less
than 3, not a good value. She saved my
life that night and stayed home with me
for six months while I recuperated"
Scleroderma results from an overpro-
duction and accumulation of collagen in
body tissues. Collagen is a fibrous type
of protein that makes up your body's
connective tissues, including your skin.
Doctors aren't sure what provokes
this abnormal collagen production but,
for unknown reasons, the immune sys-
tem turns against the body, producing
inflammation and the overproduction of
collagen.
DeVine stayed on dialysis until June
2008. During that time, her fingers con-
tracted and became so deformed that
someone had to cut her food. She had
skin lesions, her kidneys and lungs were
compromised, and she was exhausted all
the time.
She now also suffers from Raynaud's
disease, a condition that causes some
areas of your body, such as fingers, toes,
the tip of your nose and your ears, to
feel numb and cool in response to cold
temperatures or stress. It is a frequent
disorder that accompanies scleroderma.
She also deals with ongoing evalu-
ation for pulmonary fibrosis, also
associated with systemic scleroderma.
Pulmonary fibrosis can't be repaired but
medications and therapies can help ease
symptoms, such as shortness of breath,
a dry cough, fatigue, unexplained weight
loss and aching muscles and joints. She
used a wheelchair for some time and
then a walker and still uses special adap-
tive equipment to feed herself.
"That was hard for me to live with
because I've always been an active, type
A person:' DeVine said. "My form of
scleroderma is totally a systemic disease
affecting my entire body rather than a
single organ or body part, but I try my
best to live with it. I can walk now but
not very quickly. I can take a shower by
myself, but I still need support for many
things"
Hard To Diagnose
Misdiagnosis is common for sclero-
derma, according to the Scleroderma
Foundation. It sometimes takes three
years or more for an individual to be
diagnosed and receive appropriate treat-
ment because medical professionals are
not familiar with the disease.
DeVine has her follow-up appoint-