Statistics on Lupus

Cases of Lupus

  • The Lupus Foundation of America estimates that 1.5 million Americans, and at least five million people worldwide, have a form of lupus.
  • Although lupus can strike men and women of all ages, 90 percent of individuals diagnosed with the disease are women.  Most people will develop lupus between the ages of 15-44. 
  • Systemic lupus accounts for approximately 70 percent of all cases of lupus. In approximately half of these cases, a major organ, such as the heart, lungs, kidneys or brain, will be affected.  Cutaneous lupus (affecting only the skin) accounts for approximately 10 percent of all lupus cases.  Drug-induced lupus accounts for about 10 percent of all lupus cases and is caused by high doses of certain medications.  The symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually subside when the medications are discontinued.
  • In approximately 10 percent of all cases, individuals will have symptoms and signs of more than one connective tissue disease, including lupus. A physician may use the term "overlap syndrome" or "mixed connective tissue disease" to describe the illness.
  • 20 percent of people with lupus will have a parent or sibling who already has lupus or may develop lupus.
  • About 5 percent of the children born to individuals with lupus will develop the illness.
  • Lupus is two to three times more prevalent among women of color -- African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians and other Pacific Islanders -- than among Caucasian women.  
  • It is difficult to determine the annual number of new lupus cases, or the number of individuals who die from health complications of the disease. However, due to improved diagnosis and disease management, most people with the disease will go on to live a normal life span.  However, it is believed that between 10-15 percent of people with lupus will die prematurely due to complications of lupus. 
  • The U.S. Centers for Disease Control and Prevention issued a report in May 2002 which indicated that deaths attributed to lupus increased over a 20-year period, particularly among African American women ages 45-64. However, it is not clear if the rise is the result of an actual increase in lupus mortality or better identification and reporting of deaths due to complications of the disease. Trends in Deaths from SLE -- United States, 1979 - 1998

Economic Impact

  • A study reported in October 2008 found that the average annual direct health care cost of patients with lupus was $12,643.  The study's authors also determined that the mean annual productivity costs (lost hours of productive work) for participants of employment age (between the ages of 18 and 65) was $8,659. Thus, the mean annual total costs (combining direct costs and productivity costs for subjects of employment age) was $20,924.
  • According to a Lupus Foundation of America membership survey, one in four patients receive their health care through a government-sponsored program, such as Medicare or Medicaid.
  • Two of three lupus patients reported a complete or partial loss of their income because they no longer are unable to work fulltime due to complications of lupus.
  • One in three have been temporarily disabled by the disease, and one in four currently receive disability payments.

Awareness

  • While lupus is a widespread disease, awareness of the disease lags behind many other illnesses.
  • In a nationwide poll of 1,000 adults conducted for the LFA, 38% said they are somewhat or very familiar with lupus, while 39% have only heard of the name of the disease and 22% have never heard of lupus.
  • In an another survey, only four of ten young adults ages 18-24 claimed to be aware of lupus, even though the disease often strikes during the childbearing years.
  • While 65% of respondents to this survey claimed awareness of lupus, only 20% could correctly answer basic questions about the disease.

Diagnosis and Treatment

  • A LFA survey of its members suggests that more than half of those afflicted with lupus suffered at least four years, and saw three or more doctors before obtaining a correct diagnosis of lupus.
  • Nearly half of the survey participants (49%) received their diagnosis of lupus after being examined by a rheumatologist, a medical specialist who treats diseases of the connective tissue.
  • Four of ten lupus patients are treated by three or more doctors, and take six or more medications to treat symptoms of the disease.

Other Autoimmune Diseases

  • One of three patients responding to the LFA membership survey reported they had another autoimmune disease in addition to lupus, and almost half had a relative with lupus.
  • Autoimmune diseases like lupus often run in families.

Coping

  • Most lupus patients reported that they are coping well with lupus (78%), and that other family members are understanding and supportive (72%).
  • People with lupus named other family members (84%) and friends (72%) as their primary support network.
  • The survey participants cited pain (65%), lifestyle changes (61%), and emotional problems associated with lupus (50%) as the most difficult factors for coping with lupus.