What is the Burden of Systemic Lupus Erythematosus (Lupus) in the United States?
Systemic lupus erythematosus affects a conservatively estimated 322,000 to possibly over a million people in the United States.1
[Due to the lack of definitive epidemiological information, the exact number of people with lupus is currently unknown.] About nine out of 10 people who have lupus are women.2
Approximately one third of deaths occur among men and women younger than 45. During 1979-1998, the annual number of deaths from lupus rose from 879 to 1,406 and the crude death rate increased from 39 to 52 per million population, with a total of 22,861 deaths reported during this 20-year period.3
Systemic lupus erythematosus (SLE) can affect persons of any age, but strikes mostly young women of childbearing age. Lupus causes the immune system to attack its own body cells. Lupus can cause severe joint and muscle pain, extreme exhaustion, fevers, skin rashes, and can lead to organ failure and death.4
There are several forms of Lupus:
Systemic lupus erythematosus (SLE) is the most serious type of lupus. SLE can affect many parts of the body including joints, skin, kidneys, lungs, heart, blood vessels, nervous system, blood, and brain. Not discussed in this document, are two other types:
- Discoid lupus erythematosus (DLE) just affects the skin. It does not affect other organs, like SLE.
- Drug-induced lupus is a reaction to some prescription medicines. The symptoms of this type of lupus are similar to SLE, except you don't have problems with your kidneys or central nervous system.5
The cause of lupus is not known. It is likely that there is no single cause but a combination of genetic, environmental, and possibly hormonal factors that work together to cause the disease.6
Examples of Important Disparities
Lupus is three times more common in black women than in white women. It is also more common in women of Hispanic/Latina, Asian, and American Indian descent. Black and Hispanic/Latina women tend to develop symptoms at an earlier age than other women. African Americans have more severe organ problems, especially with their kidneys.7
Between 1979 and 1998, death rates from SLE increased nearly 70% among black women between the ages of 45 and 64 years. Possible reasons include an increasing incidence of SLE, later diagnosis, less access to health care, less-effective treatments, and poorer compliance with treatment recommendations. Each year during the study period, death rates were more than five times higher for women than for men and more than three times higher for blacks than for whites.8
Promising Strategies
Keys to preventing future deaths from SLE will require earlier recognition and diagnosis, appropriate therapeutic management, compliance with recommended treatment, and improved treatment of long-term consequences, such as accelerated hardening of the arteries (atherosclerosis).9
CDC is funding 2 population-based SLE registries in Georgia (DeKalb and Fulton Counties) and Michigan (Wayne and Washtenaw Counties) to better measure the prevalence, incidence, and impact of SLE.
What You Can Do
There is no known cure for lupus, but there are effective treatments.10 Early diagnosis and the commencement of treatment are vital to reducing the physical and economic impact of lupus.11 In developing a treatment plan, the doctor has several goals: to prevent flares, to treat them when they do occur, and to minimize complications. The doctor and patient should reevaluate the plan regularly to ensure that it is as effective as possible. Working closely with the doctor helps ensure that treatments for lupus are as successful as possible. Because some treatments may cause harmful side effects, it is important to promptly report any new symptoms to the doctor. It is also important not to stop or change treatments without talking to the doctor first.12
Sources
1 Helmick CG, Felson DT, Lawrence RC, Gabriel S, Hirsch R, Kwoh CK, Liang MH, Maradit Kremers H, Mayes MD, Merkel PA, Pillemer SR, Reveille JD, and Stone JH for the National Arthritis Data Workgroup. Estimates of the prevalence of arthritis and other rheumatic conditions in the United States: Part 1. Arthritis & Rheumatism 2008;58(1):15-25.
2 National Women's Health Information Center (NWHIC), 2003
3 CDC Office of Communication (OC), 2002
4 HHS Office of Minority Health Resource Center (OMHRC), 2001
5 NWHIC, 2003
6 NWHIC, 2003
7 NNWHIC, 2003
8 OC, 2002
9 OC, 2002
10 NWHIC, 2003
11 OMHRC, 2001
12 Federal Citizen Information Center (FCIC): Treating Lupus
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