Lupus is a complex systemic inflammatory disease with a broad spectrum of usually unpredictable symptoms. It is also a chronic disease that can manifest as a moderate or a devastating, life-threatening condition. When diagnosed with this autoimmune disorder, one of the ways people try to get more informed about it is by looking up recent and reliable lupus statistics.
What are the fundamental facts and numbers that people with lupus and their loved ones should know? What are the answers to the essential questions for the newly-diagnosed and long-term patients? What about the treatment options and their success? What quality of life can they expect?
Here, we collected the latest facts and stats about lupus to help you get crucial information about the disease.
Top 10 Facts and Stats That People With Lupus Should Know
- North America has the highest incidence and prevalence of lupus.
- New cases of lupus recorded a 3-fold rise in recent years.
- Lupus heritability is approximately 44%
- It takes 5 years on average for a person to be diagnosed with lupus.
- Female-to-male ratio of lupus is 10–15:1 in adults and 3–5:1 in children.
- Childhood lupus accounts for around 20% of lupus cases, according to lupus statistics.
- The rate of live births in pregnant women with lupus ranges between 85% and 90%.
- 14%–52% of hospitalizations of lupus patients are due to infections.
- The 10-year average survival rate of lupus patients is over 90%.
- 54% of lupus patients are likely to take the COVID-19 vaccine.
Lupus Prevalence by Country
1. North America has the highest incidence and prevalence of lupus.
The estimated lupus prevalence and incidence in North America are 241/100,000 people and 23.2/100,000 person-years, respectively. On the other hand, the lowest incidence is reported in Africa and Australia.
2. Approximately 1.5 million Americans have lupus.
(Lupus Foundation of America)
The estimated number of people living with lupus in the US varies between one and two million, depending on which source of lupus statistics you consult.
3. The new cases of lupus recorded a 3-fold rise in recent years.
Data showed a 3-fold rise in the incidence in the previous decades (50s–90s), mainly due to improvements in diagnosing mild forms of the disease.
4. Lupus is more prevalent in urban than in rural areas.
Lupus population prevalence data shows that lifestyle and environmental factors could be responsible for this discrepancy.
5. Up to a 9-fold rise in incidence and a 3-fold increase in lupus prevalence in non-whites has been recorded.
Numerous studies record the elevated occurrence of lupus in persons of color and some ethnic groups such as African-Caribbean and South or East Asians.
6. Hispanics tend to develop more severe types of lupus.
According to the lupus statistics by race, Hispanics tend to exhibit more frequent exacerbations of the disorder, heightened disease activity, and involvement of more than one organ. They also have more comorbidities and an increased risk of cardiovascular events.
What Causes Lupus
7. Environmental risk factors in genetically susceptible people are the leading cause of lupus.
According to the currently available data, exposure to environmental factors in combination with epigenetic modifications can cause lupus. Basically, these genetic changes modify the influence of environmental factors on immunological reactions, potentially leading to the onset of the disease.
8. Suggested risk factors for lupus are crystalline silica, tobacco smoking, oral contraceptive use, and hormone replacement therapy.
Epidemiological research indicates that these factors are strongly associated with susceptibility to lupus. Interestingly enough, alcohol consumption was inversely correlated with the risk of lupus development.
Lupus statistics show a somewhat less tangible relationship between the disease and exposure to solvents, pesticides, heavy metals, air pollution, ultraviolet light, viruses, mercury, etc. Obesity and perinatal factors have not yet been identified as risk factors for lupus.
9. Lupus heritability is approximately 44%
Recent studies have shown that lupus heritability (defined as the proportion of phenotypic variation explained by genetic factors) is lower than previously estimated (which was up to 66%). The remaining risk could be attributed to familial (26%) and non-shared environmental factors (30%).
How is Lupus Diagnosed
10. It takes 5 years on average for a person to be diagnosed with lupus.
A number of factors are responsible for the fact that it takes about five years for a person with lupus to receive a proper diagnosis, including elusive clinical picture, non-specific symptoms, and the overall low awareness of the disease among physicians.
11. Fatigue is one of the earliest symptoms of lupus.
In most patients with systemic lupus, non-specific symptoms, such as fatigue, mucocutaneous and musculoskeletal symptoms, are the most common and earliest.
12. Undiagnosed lupus patients made more use of health services in the year leading to the diagnosis.
A survey that included 682 children and young patients (10–24 years of age) reported that 9–12 months before diagnosis, patients increased the frequency of their visits to healthcare facilities almost two times. The most common symptoms were “fever, unspecified” and “chest pain, unspecified”. These complaints were also associated with a shorter time to diagnose, as evidenced by recent medical lupus facts.
13. Antinuclear antibodies (ANA) testing has a high sensitivity for lupus.
A recent meta-analysis showed that ANA at a titer 1:80 (assessed by indirect immunofluorescence method) is a proper screening test for lupus.
This was the reason for ANA to be introduced as an entry criterion for newly developed lupus. However, even in the absence of ANA, 27% of the physicians are still comfortable with diagnosing lupus. It was also shown that positive ANA might predict the clinical onset of the disease.
14. Any young woman with mild skin and joint symptoms should be examined for potential lupus.
Symptoms of lupus in women, such as facial skin rash or arthritis/arthralgia, are the most common initial symptoms of the condition that general practitioners encounter in their clinical practice.
The Most Common Lupus Symptoms at a Glance
15. The mean age of lupus onset ranges from 35 to 45 years.
Lupus can develop at any age and appears to start later in men (usually 5th to 7th decade of life) than in women (3rd to 7th decade).
16. Female-to-male ratio of lupus is 10–15:1 in adults to 3–5:1 in children.
The onset of illness, clinical symptoms, comorbidities, and disease progression vary significantly between male and female patients, according to statistics about lupus.
17. Male lupus has a distinctive set of features.
Males with lupus are a smaller subgroup of patients with distinct characteristics. Nevertheless, lupus is on the rise in men.
18. Childhood lupus accounts for around 20% of all lupus cases.
Infants suffer more often from renal (1.55-fold) and neurological (1.64-fold) involvement. As is the case with their elders, Caucasian children are less likely to develop more severe forms of the condition than those of other ethnicities.
19. Lupus nephritis has been observed in 20%–30% of lupus patients in Europe and the US.
(NCBI, Frontiers In)
The lupus nephritis prevalence, one of the most severe forms of the condition, ranges from country to country, reaching a prevalence of 60% in some ethnic groups, such as Asians, for instance.
20. Antiphospholipid syndrome occurs as a secondary disease in 15%–20% of lupus patients.
This syndrome is characterized by thrombosis and/or pregnancy loss associated with antiphospholipid antibodies. Lupus patients with these autoantibodies have a higher prevalence of valve disease, thrombocytopenia, hemolytic anemia, kidney involvement, and cognitive impairment.
21. Rate of live births in pregnant women who have lupus ranges between 85% and 90%.
(Johns Hopkins University)
Still, pregnancy in women with systemic lupus erythematosus (SLE) is considered a high-risk state, despite the recent reductions in fetal or maternal morbidity and mortality.
22. Hypertension is observed in 75% of patients with lupus.
Speaking of metabolic risk factors, lupus patients also suffer more frequently from dyslipidemia (ranging from 36% at diagnosis to 60% after three years).
23. 14%–52% of hospitalizations of lupus patients are caused by infections.
The answer to the question “is lupus contagious?” is NO. Patients with lupus are prone to infections due to many immunological alterations and immunosuppressive and biological treatments. The most common causes for hospitalization are opportunistic infections (i.e., cytomegalovirus, herpes zoster, and pneumocystis pneumonia).
Lupus Mortality Statistics
24. The pooled risk ratio for cancer in lupus patients is 1.28.
The risk for all types of malignant disorders is related to lupus inflammation, immunological processes, and exposure to smoking and viruses. Lupus is associated with non-Hodgkin lymphoma, Hodgkin lymphoma, multiple myeloma, and cervical neoplasia.
25. Depression and anxiety are present in about 40% of lupus patients.
A meta-analysis revealed that the prevalence of psychiatric disorders is much higher in lupus patients than in people with other rheumatic diseases and in the general population. This is important because these conditions are related to higher mortality, as lupus death statistics demonstrate.
26. The 10-year average survival rate of lupus patients is over 90%.
While lupus has traditionally been correlated with reduced life expectancy, mortality in lupus patients has declined over the last several decades. Before 1955, the 5-year survival rate in lupus was less than 50%; today, the 15-year survival rate is nearly 80%.
Death was historically attributed to the disease itself; nowadays, mortality is mostly due to side effects of drugs (e.g., lethal diseases in people taking potent immunosuppressive drugs) or cardiovascular events.
27. Ten-year survival rates in Asia and Africa are about 60%–70%.
Lupus survival rate statistics are significantly lower in Asia and Africa than in the US. However, these results can reflect the bias of severe cases only.
28. Lupus patients have an elevated risk of all-cause mortality.
A recent review that includes over 15,000 lupus patients revealed that the disease’s high initial severity increases the risk of all-cause mortality (3 times) and cardiovascular incidents (1.64 times), compared to patients with milder disease.
29. Hydroxychloroquine has a central role in lupus therapy.
This is especially valid for the long-term treatment of lupus patients. Hydroxychloroquine has been used since 1955, when it was approved by the FDA for this purpose, along with corticosteroids.
30. Non-steroidal anti-inflammatory drugs, immunosuppressive agents, and steroids are the most frequently used treatment modalities for lupus.
Non-steroidal anti-inflammatory drugs (NSAIDs) are usually used for short periods and in cases with low risk of complications.
On the other hand, available lupus statistics show that immunosuppressants such as azathioprine, mycophenolate mofetil, methotrexate, etc., are considered in refractory cases or when steroid doses cannot be decreased to levels proper for long-term use.
31. Vitamin D supplementation has been shown to decrease disease activity and reduce fatigue.
Since vitamin D deficiency and insufficiency are common in lupus patients, supplementation is welcomed. Furthermore, adding vitamin D may support endothelial function, reducing the risk of cardiovascular disease.
32. Subcutaneous form of belimumab allows patients to self-administer the drug and increases adherence to therapy.
According to lupus awareness facts, as the FDA approved the combination of the biological therapy (i.e., belimumab) and standard therapies, patients with advanced lupus received more options to control the disease and avoid the flares.
Along with steroids, hydroxychloroquine, azathioprine, methotrexate, the subcutaneous formulation of biological therapy increases the patients’ compliance.
33. The lupus responder index score was higher in patients on biological therapy.
Lupus patients on belimumab, positive for ANA or anti-double-stranded DNA antibodies, were found to tolerate the medication well and to be better able to control flares and disease activity. The estimated response rate of the standard plus biological therapy was 40.6%. Lupus education for patients and their relatives and caregivers can further increase the therapy’s success rate.
34. The mean annual total cost (direct and productivity) for lupus patients of employment age is $20,924.
The total cost comprises direct costs ($12,643) and productivity costs for patients between 18 and 65 years ($8,659).
Coronavirus and Lupus Statistics 2020
35. Lupus patients are highly susceptible to infections, including SARS-CoV-2.
If we consider the interplay of environmental, epigenetic modifications, autoantibodies, dysregulated immune system, and immunosuppressive treatment, it’s hardly surprising to learn that lupus patients are somewhat compromised.
36. Coronavirus disease (COVID-19) may cause a flare of lupus.
(Lupus Foundation of America)
When people with lupus get infected with SARS-CoV-2 they may experience worsening of the disease. Furthermore, people who have lupus can also suffer from other disorders that place them at greater risk for severe COVID-19, such as diabetes, cardiovascular disease, kidney disease, etc.
37. COVID-19 vaccine dramatically reduces the chance of severe or fatal illness in lupus patients.
(Lupus Foundation of America)
CDC lupus stats and statements showed that people with lupus should receive the vaccine. Moreover, there is no reason to expect that vaccines will cause a flare of the disease. The vaccine can actually protect lupus patients from serious illness, hospitalization, mechanical ventilation, or death.
38. The expected prevalence of COVID-19 in lupus patients slightly exceeds the prevalence in the general population.
Several studies showed a prevalence of COVID-19 in lupus patients amounting to 0.9% of PCR-confirmed cases and 3.7% of patients who had symptoms consistent with COVID-19 (without PCR confirmation), according to lupus statistics.
39. The most common COVID-19 symptoms in lupus patients are rhinorrhoea, myalgia, cough, sore throat, and fever.
Scientific facts about lupus list the following symptoms of COVID-19 as most common in lupus patients: rhinorrhoea (19%), myalgia (19%), cough (18%), sore throat (17%), fever (11%), diarrhea (10%), conjunctivitis (9%), dyspnoea (8%), anosmia or ageusia (5%) and chest pain (5%).
40. 54% of lupus patients are likely to take the COVID-19 vaccine.
(Lupus Alliance Research)
Just over a half of people with lupus want to receive the vaccination, whereas 24% won’t, and 22% cannot decide. The motives of those that will receive the vaccine are the willingness to protect others (97%) and protecting themselves (98%).
41. Hydroxychloroquine did not show benefits for treating COVID-19.
Hydroxychloroquine is an essential drug for lupus and other rheumatic patients. This drug can reduce disease activity and lower the risk of hyperglycemia, hyperlipidemia, and pregnancy complications. One of the important lupus awareness month facts is that the supply and refill of the patients’ prescriptions will not be interrupted due to its use for COVID-19 patients.
Fun Facts About Lupus
42. The term “lupus” comes from the Latin “wolf,” referring to the facial skin lesions.
The physician Rogerius Frugardi was the first to use the word “lupus.” It’s still speculated whether the skin lesions on the face reminded him of a wolf’s face, or of a result of an attack by a ravenous wolf.
43. Smoking is described as “the fire behind the disease” in lupus.
Indeed, smoking has been considered a trigger factor for the disease’s onset for a long time, not only because it causes oxidative stress, but also by contributing to the development of autoantibodies.
44. General practitioners believe lupus to be a much more dangerous disease than rheumatologists.
(Lupus Sci Med)
One of the potentially alarming, but also interesting facts about lupus, is that GPs properly diagnosed only about 11% of lupus patients, far fewer than rheumatologists.
45. “Spoon Theory” perfectly describes the everyday life of people with lupus.
Quantifying daily resources as spoons, and the idea that people with a chronic illness only get a couple of spoons every day is a great illustration of how people with lupus or other disabling diseases have to live.
This theory is especially valid for people with autoimmune diseases. Thousands of people call themselves “spoons,” link on social media as #spoons, using spoon theory to describe their chronic illness limits, and schedule their days for the limited number of spoons (i.e., energy) they have when they wake up.
46. Lupus is a disorder that has been chronicled since the days of Hippocrates.
(Premier Medical Group)
Lupus facts and statistics show us that lupus is a chronic autoimmune condition that has no remedy. In lupus and in other autoimmune diseases, the immune system fails, producing autoantibodies that respond to and destroy the body’s healthy cells, tissues, and organs.
Despite the disease being recognized so long ago, there is still no single, 100% efficient treatment for lupus.
How many people in the USA have lupus?
The annual occurrence of lupus in the period between the 1970s and 2000s ranged from 1 to 10 individuals per 100,000 people. In contrast, the frequency of lupus nowadays was estimated to range from approximately 5.8 to 130 per 100,000.
The Lupus Foundation of America predicts the prevalence of at least 1.5 million cases, which is likely to indicate the inclusion of milder cases of the disease. The 2008 study of the National Arthritis Data Working Group reported 161,000 identified cases of lupus and 322,000 probable cases.
What is lupus disease and what causes it?
Lupus is an inflammatory autoimmune disease characterized by the production of autoantibodies, multisystem inflammation, non-specific clinical signs, and chronic relapse and recurrence. More than 90% of cases of lupus occur in women, mostly during childbearing age.
While the exact cause of lupus is unclear, numerous genetic predispositions and gene-environmental associations have been identified. Perhaps this dynamic interplay of the possible factors can explain the variable clinical symptoms of individuals with lupus.
What are the 11 criteria for lupus?
Although new criteria for diagnosing lupus were proposed in 2019, the American College of Rheumatology’s 11 criteria are still used for reference, and they include a butterfly-shaped rash across cheeks and nose, other skin lesions, photosensitivity, mouth or nose ulcers, inflammation in two or more joints, involvement of heart and/or lungs, seizures and/or psychosis, blood disorder (anemia, leukopenia, thrombocytopenia), immunological disorders, ANA.
At least four of the eleven lupus criteria are needed to diagnose lupus.
How long do people live with lupus?
The overall 10-year survival rate currently approaches 90%, and the 15-year survival rate is about 80%. Deaths were historically attributed to the disease itself; nowadays, mortality is mostly linked to the side effects of drugs.
SLE is a chronic autoimmune disease affecting various organs. Inevitably, experts from multiple backgrounds are often involved in treating these patients, even though this may lead to fragmented care. The care for lupus patients should be evidence-based and patient-centered.
Collaboration between professionals from various backgrounds and different treatment levels is of utmost importance to address the uncertainties and complexities in the clinical management of lupus patients. This collaboration can be supported by creating robust data sets based on medical lupus statistics. This would help with patient education, enabling them to make more informed choices and to navigate through treatment and care with greater ease.
- BMC Psychiatry
- BMJ Journals
- Europe PMC
- Frontiers In
- John Hopkins University
- Lupus Alliance Research
- Lupus Foundation of America
- Lupus Foundation of America
- Lupus Foundation of America
- Lupus Sci Med
- Lupus Trust
- PLOS ONE
- Premier Medical Group
- SAGE Journals
- Science Direct
- The Lancet