Lupus Deaths on the Rise in US

Deaths from Systemic Lupus Erythematosus (SLE, or lupus) have risen sharply in recent years, according to a report issued earlier this year by the US Centers for Disease Control and Prevention (CDC). The article, published in the Morbidity and Mortality Weekly Report (MMWR), noted that the number of lupus deaths between 1979 and 1998 rose from 879 to 1406. The most significant finding was that lupus deaths among African-American women between 45 and 64 years of age rose 70% in the 20-year period.

What Is Lupus?
Under normal circumstances, the human immune system protects us from bacteria, viruses and other foreign substances by forming antibodies to help fight off specific infections. When this system doesn’t work correctly – as in the case of autoimmune disorders such as lupus – the immune system is unable to distinguish between foreign invaders and natural components of the human body. The immune system then turns its defenses against the body’s own tissues, causing pain and inflammation in the affected areas. Much more severe problems can also occur; in some cases inflammation takes place in the heart, lungs, kidneys or nervous system.

Features and Symptoms of Lupus
The causes of lupus are unknown, but scientists believe there are both genetic and environmental factors involved. There isn’t a specific gene known to cause lupus, but the illness sometimes strikes more often in families where one member has already been diagnosed with the disease. Environmentally, exposure to ultraviolet light, certain drugs, high stress levels and infection can all trigger lupus attacks.

Rebecca Anderson, PhD, Associate Professor of Surgery at the Medical College of Wisconsin, suffers from lupus herself and maintains both a professional and a personal interest in the area of autoimmune disease. “The symptoms of lupus can vary from mild to very serious,” she says, “and may mimic other illnesses or diseases.” Sometimes lupus goes into remission, periods of time during which symptoms abate or even stop for a time.

The incidence of lupus is higher among African-Americans and affects women 8 to 10 times more often than men. Lupus often occurs at a relatively young age; 18- to 45-year-olds are at the highest risk, but children and older adults can also contract the disease. According to the Lupus Foundation of America, Inc., more than 16,000 new cases of lupus occur each year.

Some common symptoms of lupus include achy or swollen joints, fevers, prolonged or extreme fatigue and skin rashes. Other symptoms include mouth sores, anemia, pleurisy, sun sensitivity, hair loss and blood clotting problems. Some lupus patients also experience periods of depression.

Diagnosis Can Be Difficult
Since there is no fixed set of symptoms at any given time, lupus can be difficult to diagnose. A specific group of antibodies is found in most people with lupus, so a blood test is essential. Depending upon other symptoms, health care providers might also use chest X-rays for lung-related symptoms, an EKG for heart problems or urinalysis for kidney disorders.

There are several different types of lupus:

• Systemic lupus can affect any system of the body, and occurs in about 70% of lupus cases, with about half of those cases affecting a major organ.
• Drug-induced lupus occurs much less often, and symptoms usually disappear when the drug is discontinued.
• Overlap syndrome or mixed connective tissue disease is usually diagnosed when lupus occurs with another connective tissue disease.
• Discoid (or cutaneous) lupus occurs in about 10% of cases, and is typically limited to the skin.

Treatment Varies
Because of the different types of disease and the wide variety of symptoms, treating lupus can be a fairly complicated process. Medications like aspirin and other non-steroidal anti-inflammatory drugs (NSAIDS) can be used, as well as corticosteroids, immunosuppressants and even anti-malarial drugs. Non-prescription recommendations can be as simple as proper diet and exercise, plenty of rest, and protection from too much sun. “For most people with lupus, symptoms can be managed,” says Dr. Anderson. “Part of effective treatment involves regular monitoring by the treating physician.”

To slow or halt the rise in lupus deaths, health authorities are focusing on early recognition and diagnosis of the disease, as well as emphasizing the importance of lupus patients’ participation in their recommended health care routine. The Lupus Foundation of America, Inc. is also beginning a campaign to increase awareness of the disease and to educate the public on the symptoms of lupus.

Coping with Symptoms
“Not all lupus patients have daily struggles,” Dr. Anderson reports, “but even patients who do well still need to accommodate the disease and respect the symptoms. For me, aching and fatigue are the most common difficulties. Mouth sores also cause problems because they are painful, and affect nutrition due to difficulty eating.” But, she adds, “Part of the daily struggle for the lupus patient is just dealing with the reality of a chronic disease. Some days may be good and others may be challenging.”

“An added frustration reported by patients with chronic diseases is that they often look much better than they feel and therefore others hold higher expectations of them,” she reports. “ Lupus patients must learn about themselves and the disease and then pace themselves accordingly. I am fortunate that most of the time I do well…I have learned to know myself.”

Lupus currently has no known cause or cure, but it’s important to remember that it is not always a life-threatening illness. Even if hospitalization is sometimes necessary, being diagnosed with lupus does not mean the end of a normal existence. “I have a very fine doctor and together we can bring most problems under control,” notes Dr. Anderson. People with lupus can help maintain their health by taking an active part in their treatment, keeping to the appropriate medication regimen and following their health care provider’s instructions carefully.

Tremendous strides in research and treatment of lupus have been made in the past ten years, and scientists continue to make progress toward understanding its causes. Researchers, as well as the thousands of Americans who endure lupus, remain hopeful that ultimately a cure will be found.

P.J. Early
HealthLink Contributing Writer

This article includes information from:
- US Centers for Disease Control and Prevention (CDC); MMWR 51(17); 3714
- US Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau
- Lupus Foundation of America, Inc.

MCW Health News presents up-to-date information on patient care and medical research by the physicians of the Medical College of Wisconsin.