32 Startling Lupus Statistics and Facts to Know in 2020

written by / June 17, 2020

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.

People who live with the disease identify as “lupus warriors,” and that’s because lupus isn’t a disease that you can overcome and become a survivor of. Unless you only suffer from the drug-induced type, it is something you will live with for the rest of your life. 

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).
  • Women of color are two to three times more likely to suffer from lupus.
  • Around 63% of lupus sufferers have originally been misdiagnosed.
  • Around 16,000 people develop lupus every year in the United States.
  • Two out of three people with lupus have lost some or all of their income because of their disease. 
  • On average, people with lupus will spend $6,000 to $10,000 a year on medical treatments, depending on the severity of their symptoms.  
  • Around 46% of people who suffer from systemic lupus erythematosus and are at the age where they should be working claim to have proper employment. 
  • It is estimated that only 5% of people whose biological parents live with lupus will develop the chronic autoimmune disease. 
  • The two most common sleep issues related to lupus are insomnia and narcolepsy. 

General Lupus Facts

Lupus Statistics

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

Of course, this number is not necessarily 100% accurate, because many people don’t have adequate information on the disease and may not have been correctly diagnosed. Celebrities living with lupus include Selena Gomez, Toni Braxton, and Seal.

(Lupus News Today)

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

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.

(Very Well Health)

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

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. 

(Lupus Foundation of America)

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

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.

(Lupus Foundation of America)

5. Around 75% of lupus patients experience rashes on the skin and arthritis. 

About 50% also experience issues with their kidneys. In addition to this, it must be noted that people who live with lupus are more likely to get infections. 

(Cleveland Clinic)

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

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. 

(Medical News Today)

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

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. 

(American College of Rheumatology)

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

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

(Lupus News Today)

9. Every lupus patient is different. 

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 the treatment for lupus is often different for individual cases, and there isn’t just one right way to treat it. 

(Lupus News Today)

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

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. 

(Creaky Joints)

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

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. 

(Lupus News Today)

Statistics About Lupus in the United States

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

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. 

(Lupus Foundation of America)

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

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.   

(Florida Health)

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

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


15. In a study done on 42,200 people with lupus, it was found that 40% were African American. 

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


Living with Lupus Facts and Statistics

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

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. 

(Very Well Health)

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

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

(Very Well Health)

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

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. 

(Lupus News Today)

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. 

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

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

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. 

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. 

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.

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. 

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. 

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. 

(World Lupus Day)

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

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. 

(American College of Rheumatology)

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

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. 

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. 

(Lupus Foundation of America)

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

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

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

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. 

(New Life Outlook Lupus)

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

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. 

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. 

(Lupus Corner)

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 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. 


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 four or more of these symptoms are experienced by a patient, 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)