Lupus Facts and Statistics
What is lupus?
Lupus is an autoimmune disease in which the immune system attacks healthy tissue. Normally, the immune system identifies and attacks bacteria, viruses, toxins, and more. In autoimmune diseases like lupus, the immune system mistakenly identifies healthy tissue as posing a danger. The body then launches an immune response against the healthy tissue. The immune response generally involves inflammation that, over time, can cause significant damage to joints, skin, muscles, connective tissue, and even major organs.
Understanding lupus and its symptoms
Inflammation and pain are the two main symptoms of lupus. Other symptoms of lupus include extreme fatigue, hair loss, sensitivity to UV light, cognitive issues, and physical impairments that can affect quality of life. The CDC reports additional symptoms of arthritis, oral ulcers (sores), lung problems, heart problems, seizures, kidney problems, psychosis, and blood cell and immune system abnormalities. Many people with lupus develop cardiovascular disease, disfiguring rashes, and painful joints; they may also have a higher risk for serious conditions, such as stroke. One in three lupus patients suffer from more than one autoimmune disease, according to the Lupus Foundation of America.
Symptoms may be chronic, or long lasting. They may come and go in “flares.” Symptoms of lupus may also disappear for months or years at a time in periods known as remission. Other adults may experience frequent flares without long periods of remission.
There are four types of lupus
Systemic lupus erythematosus
Systemic lupus erythematosus (SLE) can cause inflammation in a number of organ systems in the body. SLE accounts for approximately 70 percent of all cases of lupus. Symptoms SLE include fatigue, joint pain, rash, and fever. In about half of these cases, inflammation will affect a major organ or tissue in the body, such as the heart, lungs, kidneys, or brain.
Cutaneous lupus
Cutaneous lupus affects only the skin, and typically causes the telltale butterfly-shaped rash across the bridge of the nose and cheeks. It accounts for approximately one in ten of all cases of lupus.
Drug-induced lupus
Drug-induced lupus develops as the result of high doses of certain medications. Symptoms are similar to systemic lupus, but symptoms typically subside when the patient stops the medication. Drug-induced lupus accounts for about 10 percent of all cases of lupus.
Neonatal lupus
Neonatal lupus is a rare condition that develops when the mother’s immune system mistakenly affects the fetus. The condition causes the newborn to develop a skin rash, low blood cell counts, or liver problems; these symptoms usually disappear within six months and cause no lasting effects.
Causes of lupus
Medical scientists are still working to determine the underlying causes of lupus, but many believe environmental, genetic, and hormonal factors influence its development.
The role of genetics in lupus
Genetics play a large role in someone’s risk for developing lupus. In fact, researchers have identified nearly 100 genetic variations linked to lupus. These genetic variations can affect who develops lupus and the severity of their disease.
About 20 percent of those with lupus have a sibling or parent who already has lupus or who may develop the condition. Approximately 5 percent of children born to parents with lupus will develop the disease. While people with no family history of lupus can develop the condition, they are likely to have a family member with another autoimmune disorder.
Lupus affects 1.5 million Americans
About 1.5 million Americans have lupus, and there are an estimated 16,000 new cases each year. More than five million people worldwide have some form of the disease. The Centers for Disease Control and Prevention (CDC) tracks data about the incidence and prevalence of lupus for all ethnic sub-populations in the nation, but notes the difficulty and expense of capturing the information, as lupus is difficult to diagnose and not a reportable disease.
Lupus typically affects women of childbearing age
Nine out of ten people living with lupus are women. In fact, lupus is most common in women of childbearing age, but men, children, and teenagers may develop the condition too. Lupus typically develops in people between the ages of 15 and 44.
The biggest burdens of living with lupus
The Lupus Foundation of America says that about 78% of survey respondents said they are coping well with the condition, and 72% said that other family members were understanding and supportive. 84% of those with lupus said that family members served as their primary support network. When asked about the most difficult aspects of coping with lupus, 65% said pain, 61% cited lifestyle changes, and 50% reported emotional problems.
Lupus may be serious
Lupus may range in seriousness from mild to life-threatening. The disease requires treatment by a doctor or team of doctors who have special expertise in the diagnosis and treatment of patients with lupus. People who have lupus that receive proper preventive care, medical care, education, and support may enjoy significantly improved physical function and quality of life, compared with lupus patients who do not. The CDC says that poor access to care, getting a late diagnosis, receiving less effective treatments, and poor adherence to treatment programs may increase the damaging effects of lupus and may cause more complications and an increased risk of death.
Mortality and lupus
Lupus can cause complications that lead to premature death. In fact, an estimated 10 to 15 percent of those with the condition will die prematurely due to these complications. However, most people with lupus live a normal life span, largely due to improved diagnosis and disease management.
One study found that lupus was among the top 20 leading causes of death in females ages 5 to 64. Among Black and Hispanic women, lupus ranked as the fifth leading cause of death in ages 15 to 24 years, sixth in 25- to 34-year-olds, and eighth to ninth in those aged 34 to 44.
Health disparities and lupus
Women of color are more likely to develop lupus. Specifically, the condition is two to three times more likely in African Americans, Native Americans, Hispanics/Latinos, Alaska Natives, Asians, Native Hawaiians, and other Pacific Islanders than in Caucasian women. Research shows that lupus affects 1 in 537 young African American women.
In their study, Lupus in Minority Populations: Nature vs. Nurture (LUMINA), researchers found that African American lupus patients are more likely to have organ system involvement, more auto-antibodies, more active disease, and lower levels of social support as compared with their white counterparts.
Other research shows that minority women tend to develop the condition at a younger age, experience side effects that are more serious, and have higher mortality rates.
The economic impacts of lupus
The average annual direct health care costs of a person with lupus are about $33,223, according to a 2016 study published in Nature Reviews Rheumatology. The researchers also determined that the hours of productivity lost to lupus amounted to an average annual cost of between $1,252 and $20,046. The mean annual total costs for those with lupus may be as high as $50,000, particularly for those with severe or active lupus and certain complications of the disease.
Pain prevents many people with lupus from working. In fact, 65 percent of those with lupus list pain as the most difficult aspect of the disease.
Two out of three lupus patients reported some loss of income because of complications of lupus; about a third has experienced temporary disability due to lupus, and about a quarter currently receives disability payments. One in four lupus patients receives healthcare through Medicare or Medicaid.
Diagnosing lupus
Because it can mimic so many other illnesses, many refer to lupus as “the great imitator.” Lupus symptoms can also be vague, come and go without warning, and change over time.
According to the 2019 Lupus Awareness Survey Summary, it takes an average of nearly six years for someone to receive a diagnosis of lupus from the time that they first notice their symptoms. In another study, nearly two-thirds of those with lupus receive an incorrect diagnosis; the respondents in that study had to see an average of three healthcare providers before receiving an accurate diagnosis of lupus.
What is the state of lupus awareness?
Lupus is a widespread disease, yet not many people know lupus well. 63% of respondents to the 2019 Lupus Awareness Survey Summary said they have never heard of the disease or knew little to nothing about lupus or its symptoms. More than 60% of respondents thought it took six months or fewer to receive an accurate diagnosis of lupus. These facts and statistics suggest a significant need for continuing public education efforts.