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32 Lupus Statistics and Facts to Be Aware of in 2021

written by / January 23, 2021

Many people all over the world live with some type of autoimmune disease, which causes their body to attack itself. One of them is called “lupus,” and it can be extremely difficult to live with. There are many different debilitating symptoms of this disease, and a person living with lupus can experience any number of them. 

In the following lupus statistics and facts, you will learn about the disease and what people who live with it have to go through on a daily basis. It might help you understand why and how this disease can affect someone’s quality of life and their experience of the world around them.

Top 10 Facts About Lupus

  • Throughout the world, around 5 million people suffer from lupus. 
  • 70% of all known cases of lupus are systemic lupus erythematosus (commonly known as SLE). 
  • Most people develop lupus between the ages of 15 and 44. 
  • 80% to 90% of lupus patients are expected to live for a normal length of time. 
  • Around 63% of lupus sufferers have originally been misdiagnosed. 
  • Around 16,000 people develop lupus every year in the United States.
  • Out of 42,200 people with lupus, nearly 8,200 suffered from kidney inflammation. 
  • Only 5% of people who are birthed by patients with the disease will develop it, as well. 
  • One of the most severe and prevalent symptoms of lupus is renal inflammation. 
  • The two most common sleep issues related to lupus are insomnia and narcolepsy. 

General Lupus Facts

Lupus Statistics

How much do you know about lupus? In this section, we’ll be looking at general facts associated with lupus so that you can learn more about this autoimmune disease. 

1. Throughout the world, around 5 million people suffer from lupus. 

(Lupus News Today, GlobeNewswire)

Of course, this number isn’t necessarily 100% accurate because many people don’t have adequate information on the disease and may not have been correctly diagnosed, despite having lupus symptoms. Also, if we look at the lupus prevalence by country, we can notice major differences among different regions. For example, a 2017 study found that there were 259,474 people diagnosed with systemic lupus erythematosus in the US compared to 58,168 cases in Japan.

2. 70% of all known cases of lupus are systemic lupus erythematosus (commonly known as SLE). 

(Very Well Health)

Other types are neonatal lupus, cutaneous lupus erythematosus, and drug-induced lupus erythematosus. According to lupus facts, the last one mentioned will likely go away once the patient stops taking the medication that caused the symptoms.

3. Most people develop lupus between the ages of 15 and 44. 

(Lupus Foundation of America)

Also, 90% of lupus sufferers are women, and the majority of women develop the disease during their childbearing years. Of course, this does not mean that men and children can’t get the chronic autoimmune disease. 

4. Women of color are two to three times more likely to suffer from lupus. 

(Lupus Foundation of America)

According to lupus statistics by race, one in 537 African American women suffers from the disease. Furthermore, it is reported that African American patients who have lupus tend to have more serious issues with their internal organs and are less supported by their community. This is in comparison to Caucasian patients.

5. Around 10% of those who suffer from lupus will get hives. 

(Johns Hopkins Lupus Center)

Unlike hives which appear due to allergies, hives related to lupus last for longer than 24 hours. These lesions are itchy and can be severely uncomfortable. 

6. Lupus survival rate statistics show that, on average, 80% to 90% of patients are expected to live for a normal length of time. 

(Medical News Today)

As long as the disease is diagnosed correctly and they receive adequate treatment from medical professionals, most people living with lupus will not have their life expectancy affected by the disease. 

7. Only around 20% of lupus sufferers get the disease as children. 

(American College of Rheumatology)

If a child develops lupus, it is referred to as “childhood-onset SLE,” but it is highly unlikely that a child will develop the disease before the age of five. 

8. Interesting facts about lupus: there is no known 100% accurate cause of lupus. 

(Lupus News Today)

However, it is believed that the environment and genetics are involved in the development of this chronic autoimmune disease. 

9. Every lupus patient is different. 

(Lupus News Today)

Because the disease can affect a person in many different ways with a plethora of symptoms, every person experiences lupus in a unique way. This is why lupus treatment is often different for individual cases, and there isn’t just one right way to treat it. 

10. Lupus statistics reveal that the disease can easily be misdiagnosed as other chronic illnesses. 

(Creaky Joints)

These other diseases that lupus can be misdiagnosed as include fibromyalgia, Lyme disease, and rheumatoid arthritis, because they all share symptoms. This is why lupus can take a while to identify in a patient. 

11. Around 63% of lupus sufferers have originally been misdiagnosed. 

(Lupus News Today)

On average, a person with lupus will only be correctly diagnosed after six years of living with the symptoms. This is largely because the disease can appear to be another disease at first, depending on the specific symptoms the person shows. 

Statistics About Lupus in the United States

Here, we’ll be looking at lupus in the United States specifically. 

12. Around 16,000 people develop lupus every year in the United States.

(Lupus Foundation of America)

Because lupus is difficult to diagnose, we can’t be certain that this number is not higher due to people being misdiagnosed or not diagnosed at all. 

13. In 2017 alone, there were 100 deaths related to systemic lupus erythematosus in Florida. 

(Florida Health)

In addition to the deaths, there were 1,202 hospitalizations and 1,609 visits to the emergency room by people suffering from this form of lupus. This just shows the lupus prevalence in Florida and in the United States.   

14. Out of 42,200 people with lupus, nearly 8,200 suffered from kidney inflammation. 

(WebMD)

According to WebMD, this was found out after a study done between 2000 and 2006, where researchers looked at Medicaid claims made by lupus sufferers between the ages of 18 and 65. 

15. A study done on 42,200 people with lupus found that 40% were African American. 

(WebMD)

Furthermore, 2% were Native American, 5% were Asian, 15% were Hispanic, and 38% were Caucasian. 

Living with Lupus – Facts and Statistics

What is it like to live with lupus? In this section, we’ll be discussing life with lupus. 

16. Two out of three people with lupus have lost some or all of their income because of their disease. 

(Very Well Health)

A study conducted by the Lupus Foundation of America showed that two-thirds of people living with lupus had lost their income due to being unable to function properly because of the disease. 

17. The average lupus sufferer will spend $6,000 to $10,000 a year on treatments. 

(Very Well Health)

This is an estimated amount that can go much higher depending on the severity of the patient’s symptoms. Some may end up spending as much as thousands of dollars on medical treatments in just one month. 

18. According to lupus stats, 84% of patients with the disease claim that their family members form their biggest support system. 

(Lupus News Today)

This could be because 20% of lupus patients have a close relative who is suffering from the same autoimmune disease, and therefore, they have someone with intimate knowledge of the disease in their life. 

19. If a woman with lupus wants to get pregnant, she should not try for a baby less than six months after the last flare-up. 

(CDC)

According to Centers for Disease Control, lupus pregnancy statistics show that pregnancy could be considered high-risk for women who suffer from the disease. This is even more relevant if they’ve been experiencing the symptoms frequently or severely. Getting pregnant during a period with regular flares could end up causing a miscarriage, a stillborn child, or health issues for both the mother and the child. 

Lupus Awareness Facts

These are facts that everyone should know about this autoimmune disease. 

20. SLE sufferers have something called “flares,” which is when their symptoms flare up. 

(CDC)

These “flares” may include fevers, skin rashes, chronic pain, exhaustion, and more. After the flare, lupus sufferers are likely to go into remission, which is a time frame where they don’t experience these symptoms or experience them to a lesser degree. 

21. More severe SLE symptoms include kidney, lung, and heart issues. 

(CDC)

The mentioned organs can take the strain and cause a variety of ailments. People with lupus may also be sensitive to the sun, have ulcers in their mouth, suffer from arthritis, and experience abnormalities in their blood cells. 

22. Around 46% of systemic lupus erythematosus sufferers who are at the age where they should be working claim to have proper employment. 

(CDC) 

This is because the disease can affect someone’s quality of life in regard to their mental and physical health, as well as the way they function in a social setting. The fatigue they often experience makes it difficult to maintain a good quality of life. 

23. Lupus prognosis statistics show that there is no one way to tell if someone has lupus, but rather, it could take a number of tests.

(CDC)

These tests include reviewing the medical history of the patient, which should include all the different symptoms they have experienced, checking whether they have a family history of the disease, conducting a full physical examination, taking blood and urine tests, and doing a biopsy of the kidneys and/or skin. 

24. There are generally five medications used to treat lupus. 

(CDC)

These are corticosteroids, nonsteroidal anti-inflammatory drugs, BLyS-specific inhibitors, antimalarial medications, and immunosuppressive agents (chemotherapy). Of course, there are other medications used to treat the symptoms of lupus, too, such as those for blood pressure. 

25. Lupus statistics estimate that only 5% of people who are birthed by patients with the disease will develop it, as well. 

(World Lupus Day)

While genetics can play a role in lupus, there are many healthy people born to mothers who live with lupus. On the other side of that statistic, many people who develop lupus have no family connection to the disease. 

26. One of the most severe and prevalent symptoms of lupus is renal inflammation. 

(American College of Rheumatology)

It’s important that people living with lupus look out for swollen hands or feet, puffy eyes, abnormalities in their urine, and high blood pressure. Facts about lupus say that these could all be signs of renal inflammation, and it’s best to notice the symptoms early so the inflammation can be treated quickly. 

27. Lupus sufferers need to stay away from vaccines that have live viruses in them. 

(CDC)

These include the chickenpox vaccine, the nasal-spray version of the flu vaccine, the shingles vaccine, and the MMR vaccine for measles, mumps, and rubella. These could make people with lupus sick and should be avoided unless spoken about with a medical professional who has access to their full medical history.  

28. Fun facts about lupus: the name of the disease originated from a physician in the 13th century. 

(Lupus Foundation of America)

A 13th-century physician, Rogerius Frugardi, thought that the skin rash that commonly appears on the face of lupus sufferers looked like the bite of a wolf. And “lupus” is derived from the name for a wolf in Latin. 

29. The “spoon theory” is a way that people living with diseases like lupus explain what it feels like. 

(Healthline)

It originated from a person trying to explain the limited amount of energy they felt as someone living with lupus. These days, many people identify as “spoonies,” and there is even an online community for such people. 

Lupus and Sleep Facts

Here, we’ll be looking at the relationship between lupus and sleep. 

30. Lupus stats show that people who suffer from this disease have much more trouble sleeping than healthy people. 

(New Life Outlook Lupus)

This is according to a study conducted by the Journal of Rheumatology, which was published in 2013. This is especially troublesome as those who live with lupus often experience extreme fatigue that makes it difficult to go about their daily lives. 

31. Those with systemic lupus erythematosus require more rest when their disease is active. 

(MedicineNet)

According to researchers, those who don’t sleep well are more likely to experience the symptoms of fatigue related to their lupus diagnosis. Lupus education tells us that it is incredibly important for people living with the disease to rest for decent periods of time. 

32. The two most common sleep issues related to lupus are insomnia and narcolepsy. 

(Lupus Corner)

Narcolepsy and insomnia can make living with lupus even more difficult. Poor sleep can exacerbate the symptoms of the disease that they may already be experiencing. 

Final Thoughts

People living with lupus often go for a long period of time before being diagnosed. This can make the treatment more difficult and leave them feeling desperate or depressed. The symptoms of this disease can vary from person to person, and there is no cure that can stop the disease entirely. Lupus statistics for 2021 show that this disease can be difficult to live with, but it’s not life-threatening if treated correctly. Also, sleep is important for the average person, but for someone with lupus, it is crucial. Unfortunately, the disease causes problems with sleep as well as daytime fatigue. 

FAQs

How many people die annually from lupus?

The latest statistics indicate that an average of 1,176 deaths were caused by SLE per year between 2010 and 2016. Researchers came to this conclusion after looking through death certificates of residents of the United States. 

(CDC)

What is the average life expectancy with lupus?

As long as a person with lupus doesn’t develop a fatal infection, they should have a normal or near-normal life span. Lupus sufferers have lived with this autoimmune disease for as long as 40 years after diagnosis. 

(Medical News Today)

How many people in the USA have lupus?

Statistically, 1.5 million people in the United States have lupus. That’s a large portion of the population living with this incurable chronic autoimmune disease. As mentioned earlier, it is estimated that 16,000 new cases are reported each year. And this is only the number of people who have been diagnosed. Due to the disease being difficult to diagnose, the actual number of people developing it every year may be even higher. 

(Very Well Health)

What is lupus disease and what causes it?

Lupus is a chronic autoimmune disease that causes the person’s own immune system to see healthy tissue as a threat and, therefore, attack it. The causes aren’t 100% known yet, but it has been determined that the environment and genetics do play a part in the development of the disease. However, not much more is known. 

(Mayo Clinic)

What are the 11 criteria for lupus?

The 11 criteria for the diagnosis of lupus include the following:

  • Nose and mouth ulcers that aren’t painful.
  • A malar rash on the face shaped like a butterfly
  • Sensitivity to the sun
  • Skin rashes
  • Inflamed lining of the lung and/or heart
  • Joint inflammation in more than one place in the body
  • The immune system targeting medically sound tissue
  • Abnormalities in the blood cells
  • Neurological issues 
  • Antinuclear antibodies
  • Kidney problems

When a patient experiences four or more of these symptoms, a doctor will likely consider lupus as the cause.  

(Lupus Research Alliance)

How long do people live with lupus?

The majority of people suffering from lupus won’t die from it early on. In fact, most will live for a normal period of time, as the latest lupus statistics show. 

(Medical News Today)

Sources