Lupus has the dubious distinction of being called “America’s
least-known major disease.” The name lupus, Latin for wolf, comes
from red marks on the skin that, according to the physician who named
it, resemble bite marks of a wolf. An autoimmune disease that causes the
immune system to attack and harm its own tissues, lupus has symptoms that
range from mild skin rashes and flu-like aches to life-threatening kidney
Women face a far greater risk of the disease than men. Of those diagnosed
90 percent are women, usually of childbearing age. Non-white women are
more likely than whites to get lupus, with women of African descent at
highest risk. The disease strikes 1 in 250 African-American women, compared
to 1 in 1,000 white women.
Lupus develops when the immune system mistakenly identifies an invader.
Antibodies are special cells which recognize and attack potentially harmful
foreign organisms, such as bacteria, fungi, and viruses, within the body.
In autoimmune diseases like lupus, defective antibodies recognize the
body’s own tissues as foreign and turn against them. The result
is an inflammation of the tissues, causing redness, swelling, elevated
blood flow and tissue destruction.
Lupus patients typically go through periods in which they have few or
no symptoms, alternating with flares when symptoms are more severe. Flares
may be triggered by a number of factors, including stress, exposure to
the sun or certain medications or foods.
These unpredictable changes make life particularly difficult; not knowing
whether a flare will occur, a patient’s plans often remain tentative
until the last minute. “With lupus,” recounts one 40-year-old
woman, “things change so quickly. I would call the doctor and say
this is what’s going on with me, and by the time I got there, that
was not the problem anymore. And so you begin to wonder, ‘Am I really
sick? What on earth is wrong with me?’”
Symptoms of the disease vary depending on the area of the body affected.
Common symptoms include fever, fatigue, unexplained weight loss or hair
loss, photosensitivity, decreased appetite and muscle pain. Characteristic
of lupus is a red or brownish butterfly-shaped rash across the nose and
cheeks. Disc-shaped rashes are also common, causing red, scaly bumps similar
Symptoms affecting the kidneys are among the most threatening. About
half of lupus patients contract a kidney disease at some point in their
lives. When antibodies attack a foreign invader, they are assisted by
complement proteins; the two join to destroy the invader, releasing debris
from the battle into the bloodstream.
With autoimmune diseases like lupus, excess debris is produced, flooding
the liver and spleen and settling in the kidneys, where it can inhibit
blood flow and kill cells. Kidney failure and other life-threatening damage
to the kidney can occur. Proteins or other abnormal substances in the
urine are a sign of kidney damage.
Studies are currently underway to test whether infusions of complement
inhibitors can play a role in slowing lupus.
Arthritis and other joint problems occur in about 90 percent of all lupus
patients. Although it may be difficult, regular exercise is thought to
be particularly beneficial to lupus patients. Says Dr. Rosalind Ramsey-Goldman,
lead author of a National Institutes of Health study on the effects of
exercise on lupus: “Exercise improves joint mobility, muscle strength
and function, thus producing less pain. The lupus patients reported less
fatigue and overall felt much better.”
Exercise also helps to minimize the negative effects of steroids and
other medications often prescribed to treat lupus. Because lupus patients
are often photosensitive, long-sleeved clothing, a hat and plenty of sunscreen
Lupus can affect the heart, lungs and circulatory system. Accumulation
of fluid in the lungs (pleuritis) can result from inflammation of tissues
in the chest cavity. Signs of fluid buildup include chronic coughing and
shortness of breath.
Inflammation of the tissues around the heart, as well as the heart itself,
can cause arrhythmia, heart failure and even sudden death. Blood clots
often develop, and are a particularly common cause of complications in
the second decade after diagnosis. Anemia and low counts of certain types
of white blood cells are common in lupus patients, making blood tests
a helpful tool in diagnosing the disease. Pale or purple fingers and toes
may also be a sign of lupus.
The causes of lupus have long remained a mystery. Due to the disease’s
prevalence among women, some believe it may be linked to female hormones
or to the stress of pregnancy and childbirth. Many women acquire lupus
during or shortly after a pregnancy.
Childbirth and other hardships unique to women may also account for the
fact that women are five times as likely as men to die of lupus. Lupus-related
deaths are three times as likely in blacks as in whites, possibly a result
of lack of access to quality medical care in black communities.
Genetics are also thought to play a role. A 2001 study at the University
of California, San Francisco found that although no single gene appeared
to cause lupus, Caucasians with the disease who had a specific genetic
variant were more than four times as likely to develop severe nephritis,
or kidney complications. No such susceptibility was evident in non-white
patients with the same genetic variant. Researchers expect to find further
genetic links in future studies.
Treatment for lupus varies with the organ systems affected and the severity
of the patient’s case. A substantial proportion of patients suffer
from a mild form of lupus which requires little or no treatment.
Mild inflammation of joints can often be treated with nonsteroidal anti-inflammatory
drugs such as ibuprofen and aspirin. Antimalarial medications are often
prescribed for more severe joint problems and skin rashes.
Patients with potentially life-threatening cases may require stronger
medication such as steroids, which can have serious side effects. Other
medications specific to personal symptoms may be needed.
All lupus patients require regular evaluations; those with more severe
symptoms should be treated by a specialist.
There are no known ways to avoid developing lupus. It may be possible,
however, to prevent flares. To avoid a flare, patients should eat a healthy
diet, exercise regularly, learn to manage stress, get enough sleep and
avoid prolonged exposure to the sun.
Although there is currently no cure for lupus, new developments give
hope for one in the not distant future. The Alliance for Lupus Research
(ALR) recently received a 12 million dollar donation from Robert Wood
Johnson IV after a family member of the New York Jets owner was struck
with the disease. Johnson has committed to raising $50 million more in
hope of finding a cure. The ALR, working in conjunction with the Arthritis
Foundation, has set a goal of finding a cure within 10 years.
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