The Lupus Foundation
of America Web site defines lupus as a chronic autoimmune disease
in which the immune system, for unknown reasons, becomes hyperactive
and attacks normal tissue.
It affects nine times more women than men, about 1.5 million Americans
total. Symptoms can come and go in episodes known as "flares"
and vary according to the type of lupus and the individual. People
who have it can experience fevers over 100 degrees, hair loss, sensitivity
to the sun, skin rashes, arthritis, fatigue, anemia or chest pain.
Even though it has no known cause or cure, lupus can be managed.
Christine Miserandino of Lindhurst, New York was diagnosed at 14.
"At first, local doctors didn't know what was wrong,"
she said in a telephone interview. "They said I had fibromyalgia,
then arthritis, then rheumatic fever. Then we went to Mayo Clinic
in Minnesota. Once we knew we were fighting lupus, we could make
a plan."
Later, she attended Hofstra University and worked in a company's
marketing department dealing with event management and conferences.
Three years into that position she experienced a flare and lost
all her hair from drug side effects. Now, age 28, Miserandino isn't
able to work at all due to almost constant pain, including swelling
around her heart and lungs that hampers breathing.
About six weeks ago, she experienced another flare. "I was
admitted to the hospital after passing out," she said. "For
the first time ever, the lupus seems to have affected my neurological
system. My brain and feet are working, but when I tell my feet to
walk they don't move well. Now I am using a walker. The feeling
is starting to come back, though."
Her previous flare was three years ago, and had different symptoms.
"Amazingly, some people think I'm making it all up," she
said of her lupus. "People say I don't look sick, but I'm never
not in pain. It isn't easy to deal with because people either don't
believe me, think I'm lazy, or they can't understand what they can't
see."
Because "hidden" disabilities are so often misunderstood,
she started a Web site for doubters, www.butyoudontlooksick.com.
Advising people with the disease, she said, "You can live a
normal life, but you need to adapt and make choices. Be sure to
get as much information as possible from reliable sources. The hardest
thing is not knowing where to get information."
For more information, go to www.lupus.org
or www.danieljvance.
com.
This column is made possible by a grant from Blue Valley Sod, www.bluevalleysod.com.
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