What Black Women Should
Know About Lupus





Prepared by the
NIAMS Task Force on Lupus in High Risk Populations
National Institute of Arthritis and Musculoskeletal and Skin Diseases
1 AMS Circle
Bethesda, Maryland 20892-3675


The NIAMS, a part of the National Institutes of Health, leads and coordinates the Federal biomedical research effort in lupus.

Do You or Someone You Know Have Signs of Lupus?

Lupus is a serious health problem that affects mainly young women. The disease often starts between the ages of 15 and 44.

People of all races may get lupus. However, lupus is three times more common in black women than in white women.

As many as 1 in 250 young black women will get the disease.


What Is Lupus?

Lupus is a disease that can affect many parts of the body. It can affect the joints, the skin, the kidneys, the lungs, the heart, or the brain. Only a few of these parts of the body are affected in most people.

Something goes wrong with the body's immune system in lupus. We can think of the immune system as an army within the body with hundreds of defenders (known as antibodies).

They defend the body from attack by germs and viruses. In lupus, however, the immune system becomes overactive and goes out of control. The antibodies attack healthy tissues in the body. This attack induces inflammation, causing redness, pain, and swelling in the affected parts of the body. This tendency for the immune system to become overactive may run in families.

What Does a Person With
Lupus Look Like?

Many people with lupus look healthy.

What Are the Signs of Lupus?

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

Common Signs of Lupus Are:

  • Red rash or color change on the face, often in
    the shape of a butterfly across the bridge of the
    nose and the cheeks

  • Painful or swollen joints

  • Unexplained fever

  • Chest pain with breathing

  • Unusual loss of hair

  • Pale or purple fingers or toes from cold or stress

  • Sensitivity to the sun

  • Low blood count

These signs are more important when they occur together.

Other signs of lupus can include mouth sores, unexplained "fits" or convulsions, hallucinations or depression, repeated miscarriages, and unexplained kidney problems.

What Causes Lupus?

We don't know what causes the immune system to become overactive. In some people, lupus becomes active after exposure to sunlight, infections, or certain medications.

Can You Catch Lupus From Someone Else?

No, lupus is not catching. You can't give it to someone else. Also, it is not a form of cancer. It is not AIDS.

Does Lupus Run in Families?

Most relatives of lupus patients do not develop the disease, but in some families more than one member gets lupus. If a relative of a lupus patient develops signs of lupus, she or he should see a doctor.

How Serious Is Lupus?

Signs of lupus tend to come and go. There are times when the disease quiets down, or goes into remission. At other times, lupus flares up, or becomes active. Years ago many people with lupus died. Now with good medical care most people with the disease can lead active, productive, and fulfilling lives.

Are There Different Kinds of Lupus?

There are three major types of lupus: (1) lupus that affects certain parts of the body (systemic lupus erythematosus), (2) lupus mainly of the skin (discoid or cutaneous lupus), and (3) lupus caused by medicine (drug-induced lupus).

How Is Lupus Treated?

The doctor may treat each lupus patient in a different way because the signs of lupus often differ from one person to another. The doctor may give aspirin or similar medicine to treat the painful, swollen joints and the fever. Creams may be prescribed for the rash, and stronger medicines prescribed for more serious problems.

Is There a Cure for Lupus?

At this point, lupus cannot be cured. However, in many cases, signs of the disease can be relieved. The good news is that with the correct medicine and by taking care of themselves, most lupus patients can hold a job, have children, and lead a full life.

Outlook

The outlook for lupus patients has greatly improved. Research doctors supported by the National Institutes of Health are studying many aspects of lupus, such as what goes wrong with the immune system, why the disease runs in families, how lupus causes damage in the body, and why it can lead to repeated miscarriages. Others are researching why lupus is so much more common in women, especially black women. Researchers have learned a great deal about lupus and are studying new ways to treat and, ultimately, prevent the disease. The future holds great promise for improving the health of all Americans who have lupus.



Awareness

Please share this booklet with your family and friends. Someone you know or care about may have lupus.


For further information on lupus, see your doctor or health clinic and contact your local chapter of the following organizations:

Lupus Foundation of America, Inc.
4 Research Place
Suite 180
Rockville, Maryland 20850-3226
(301) 670-9292
(800) 558-0121


The American Lupus Society
260 Maple Court
Suite 123
Ventura, California 93033
(805) 339-0443
(800) 331-1802

Both of these groups can provide more detailed information on lupus through free pamphlets and newsletters. They also have pamphlets in Spanish. The two groups also can refer people to doctors and clinics who see a lot of lupus patients.


# # #

This booklet is not copyrighted. Readers are encouraged to duplicate and distribute as many copies as needed. Additional copies are available from the NIAMS Task Force on Lupus in High Risk Populations, National Institute of Arthritis and Musculoskeletal and Skin Diseases, 1 AMS Circle, Bethesda, Maryland 20892-3675. Comments and suggestions about this booklet or other possible booklets are welcome.



Checklist on Signs of Lupus

Use this page to make notes to take to your doctor

________ Red rash or color change on face, often in the shape of a butterfly across the bridge of the nose and the cheeks
________ Painful or swollen joints
________ Unexplained fever
________ Chest pain with breathing
________ Unusual loss of hair
________ Pale or purple fingers or toes from cold or stress
________ Sensitivity to sun
________ Low blood count

These signs are more important if they occur together.


U. S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Public Health Service
National Institutes of Health
National Institute of Arthritis and Musculoskeletal and Skin Diseases
NIH Publication No. 93-3219
June 1994