A row of four women with black t-shirts and different hairstyles

If you have lupus, you probably have many questions. Lupus isn’t a
simple disease with an easy answer. You can’t take a pill and make it go away.
The people you live with and work with may have trouble understanding that
you’re sick. Lupus doesn’t have a clear set of signs that people can see. You
may know that something’s wrong, even though it may take a while to be

Lupus has many shades. It can affect people of different races,
ethnicities, and ages, both men and women. It can look like different diseases.
It’s different for every person who has it.

The good news is that you can get help and fight lupus. Learning
about it is the first step. Ask questions. Talk to your doctor, family, and
friends. People who look for answers are more likely to find them. This section
can help you get started.

  • What Is Lupus?
  • What Are the Signs and Symptoms of Lupus?
  • What Is a Flare?
  • What Causes Lupus?
  • Who Gets Lupus?
  • What Will the Doctor Do?
  • Will I Get Medicine?
  • How Can I Cope With Lupus?
  • Hope Through Research
  • Where Can People Find More Information About Lupus?
  • Acknowledgments

What Is Lupus?

Lupus is an autoimmune (AW-toe-ih-MYOON) disease. Your body’s
immune system is like an army with hundreds of soldiers. The immune system’s job
is to fight foreign substances in the body, like germs and viruses. But in
autoimmune diseases, the immune system is out of control. It attacks healthy
tissues, not germs.

You can’t catch lupus from another person. It isn’t cancer, and it
isn’t related to AIDS.

Lupus is a disease that can affect many parts of the body.
Everyone reacts differently. One person with lupus may have swollen knees and
fever. Another person may be tired all the time or have kidney trouble. Someone
else may have rashes. Lupus can involve the joints, the skin, the kidneys, the
lungs, the heart and/or the brain. If you have lupus, it may affect two or three
parts of your body. Usually, one person doesn’t have all the possible

There are three main types of lupus:

  • Systemic lupus erythematosus (eh-RITH-eh-muh-TOE-sus) is the most
    common form. It’s sometimes called SLE, or just lupus. The word “systemic” means
    that the disease can involve many parts of the body such as the heart, lungs,
    kidneys, and brain. SLE symptoms can be mild or serious.
  • Discoid lupus erythematosus mainly affects the skin. A red rash may
    appear, or the skin on the face, scalp, or elsewhere may change color.
  • Drug-induced lupus is triggered by a few medicines. It’s like SLE,
    but symptoms are usually milder. Most of the time, the disease goes away when
    the medicine is stopped. More men develop drug-induced lupus because the drugs
    that cause it, hydralazine and procainamide, are used to treat heart conditions
    that are more common in men.

What Are the Signs and Symptoms of Lupus?

Lupus may be hard to diagnose. It’s often mistaken for other
diseases. For this reason, lupus has been called the “great imitator.” The signs
of lupus differ from person to person. Some people have just a few signs; others
have more.

Common signs of lupus are:

  • Red rash or color change on the face, often in the shape of a butterfly
    across the nose and cheeks
  • Painful or swollen joints
  • Unexplained fever
  • Chest pain with deep breathing
  • Swollen glands
  • Extreme fatigue (feeling tired all the time)
  • Unusual hair loss (mainly on the scalp)
  • Pale or purple fingers or toes from cold or stress
  • Sensitivity to the sun
  • Low blood count
  • Depression, trouble thinking, and/or memory problems

Other signs are mouth sores, unexplained seizures (convulsions),
“seeing things” (hallucinations), repeated miscarriages, and unexplained kidney

What Is a Flare?

When symptoms appear, it’s called a “flare.” These signs may come
and go. You may have swelling and rashes one week and no symptoms at all the
next. You may find that your symptoms flare after you’ve been out in the sun or
after a hard day at work.

Even if you take medicine for lupus, you may find that there are
times when the symptoms become worse. Learning to recognize that a flare is
coming can help you take steps to cope with it. Many people feel very tired or
have pain, a rash, a fever, stomach discomfort, headache, or dizziness just
before a flare. Steps to prevent flares, such as limiting the time you spend in
the sun and getting enough rest and quiet, can also be helpful.

Preventing a Flare

  • Learn to recognize that a flare is coming.
  • Talk with your doctor.
  • Try to set realistic goals and priorities.
  • Limit the time you spend in the sun.
  • Maintain a healthy diet.
  • Develop coping skills to help limit stress.
  • Get enough rest and quiet.
  • Moderately exercise when possible.
  • Develop a support system by surrounding yourself with people you trust and
    feel comfortable with (family, friends, etc.).

What Causes Lupus?

We don’t know what causes lupus. There is no cure, but in most
cases lupus can be managed. Lupus sometimes seems to run in families, which
suggests the disease may be hereditary. Having the genes isn’t the whole story,
though. The environment, sunlight, stress, and certain medicines may trigger
symptoms in some people. Other people who have similar genetic backgrounds may
not get signs or symptoms of the disease. Researchers are trying to find out

Who Gets Lupus?

Anyone can get lupus. But 9 out of 10 people who have it are
women. African American women are three times more likely to get lupus than
white women. It’s also more common in Hispanic/Latino, Asian, and American
Indian women.

Both African Americans and Hispanics/Latinos tend to develop lupus
at a younger age and have more symptoms at diagnosis (including kidney

They also tend to have more severe disease than whites. For
example, African American patients have more seizures and strokes, while
Hispanic/Latino patients have more heart problems. We don’t understand why some
people seem to have more problems with lupus than others.

Lupus is most common in women between the ages of 15 and 44. These
are roughly the years when most women are able to have babies. Scientists think
a woman’s hormones may have something to do with getting lupus. But it’s
important to remember that men and older people can get it, too.

It’s less common for children under age 15 to have lupus. One
exception is babies born to women with lupus. These children may have heart,
liver, or skin problems caused by lupus. With good care, most women with lupus
can have a normal pregnancy and a healthy baby.

Diagnosis: How Do You Find Out If You Have Lupus?

  • Medical history–Telling a doctor about your symptoms and other problems you
    have had can help him or her understand your situation. Your history can provide
    clues to your disease. Use the checklist at the end of this booklet to keep
    track of your symptoms. Share this checklist with your doctor. Ask your family
    or friends to help you with the check

Lupus and Pregnancy

pregnant black woman

years ago, medical textbooks said that women with lupus should not get pregnant
because of the risks to both the mother and unborn child. Today, most women with
lupus can safely become pregnant. With proper medical care, you can decrease the
risks associated with pregnancy and deliver a normal, healthy

increase the chances of a happy outcome, however, you must carefully plan your
pregnancy. Your disease should be under control or in remission before
conception takes place. Getting pregnant when your disease is active could
result in a miscarriage, a stillbirth, or serious complications for you. It is
extremely important that your pregnancy be monitored by an obstetrician who is
experienced in managing high-risk pregnancies and who can work closely with your
primary doctor. Delivery should be planned at a hospital that can manage a
high-risk patient and provide the specialized care you and your baby will need.
Be aware that a vaginal birth may not be possible. Very premature babies, babies
showing signs of stress, and babies of mothers who are very ill will probably be
delivered by cesarean section.

problem that can affect a pregnant woman is the development of a lupus flare. In
general, flares are not caused by pregnancy. Flares that do develop often occur
during the first or second trimester or during the first few months following
delivery. Most flares are mild and easily treated with small doses of

complication is pregnancy induced hypertension. If you develop this serious
condition, you will experience a sudden increase in blood pressure, protein in
the urine, or both. Pregnancy-induced hypertension is a serious condition that
requires immediate treatment, usually including delivery of the

The most
important question asked by pregnant women with lupus is, “Will my baby be
okay?” In most cases, the answer is yes. Babies born to women with lupus have no
greater chance of birth defects or mental retardation than do babies born to
women without lupus. As your pregnancy progresses, the doctor will regularly
check the baby’s heartbeat and growth with sonograms. About 10 percent of lupus
pregnancies end in unexpected miscarriages or stillbirths. Another 30 percent
may result in premature birth of the infant. Although prematurity presents a
danger to the baby, most problems can be successfully treated in a hospital that
specializes in caring for premature newborns.

About 3
percent of babies born to mothers with lupus will have neonatal lupus. This
lupus consists of a temporary rash and abnormal blood counts. Neonatal lupus
usually disappears by the time the infant is 3 to 6 months old and does not
recur. About one-half of babies with neonatal lupus are born with a heart
condition called heart block. This condition is permanent, but it can be treated
with a pacemaker.

            Planning your

You and
your spouse or partner should talk to your doctor about the possibility of
pregnancy. You and the doctor should be satisfied that your lupus condition is
under good control or in remission. Your doctor should also review potential
problems or complications that could arise during the pregnancy, their
treatment, and outcomes for both you and the unborn child.

should select an obstetrician who has experience in managing high-risk
pregnancies. Additional experience in managing women with lupus is also good.
The obstetrician should be associated with a hospital that specializes in
highrisk deliveries and has the facilities to care for newborns with special
needs. It is a good idea to meet with the obstetrician before you become
pregnant so that he or she has an opportunity to evaluate your overall condition
before conception. This meeting also will give you the opportunity to decide if
this obstetrician is right for you.

your health insurance plan. Make sure that it covers your health care needs and
those of the baby and any problems that may arise.

your work and activities schedule. Be prepared to make changes if you are not
feeling well or need more rest.

your financial status. If you work outside the home, your pregnancy and
motherhood could affect your ability to work.

Develop a
plan for help at home during the pregnancy and after the baby is born.
Motherhood can be overwhelming and tiring, and even more so for a woman with
lupus. Although most women with lupus do well, some may become ill and find it
difficult to care for their child.

            After the Baby is Born
(The Postpartum Period)

Be sure
your doctor or nurse reviews with you the physical and emotional changes that
occur as your body returns to normal. These changes are the same as those
experienced by women who do not have lupus.

Be aware
that postpartum complications can arise. In addition to those that any woman who
has been pregnant can experience, you might develop a lupus

Try to
breastfeed your baby. It is the ideal, low-cost way to provide nutrition for
your baby in the first weeks or months of life. It takes time for mothers and
babies to learn how to breastfeed and it may take a few weeks to get adjusted.
Because breastfeeding can sometimes be a challenge, ask your doctor or nurse for
help so you do not become discouraged. Sometimes, though, breastfeeding may not
be possible for the following reasons:

A premature baby may
not be able to suck adequately. Feeding your baby through a tube at first and
then by bottle may be necessary. However, you may still be able to pump your
breast milk for your baby.

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