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With its constellation of quirky symptoms (many of which can mimic other conditions), lupus is a hard disease to diagnose, leading some to call it “the great imitator.” Scientists don’t know exactly what causes lupus, and most people know very little about the disease—even though it affects an estimated 1.5 million Americans.
Lupus is an autoimmune disease that can attack the skin, joints, organs, nervous system, blood cells, kidneys, or some combination of body systems. Most cases strike women, although lupus can occur in men, too.
To understand lupus, it helps to know how the immune system works. A healthy body is hardwired to produce antibodies that fight off germs and other foreign substances. Lupus occurs when this system goes haywire. Instead of defending against enemy invaders, like viruses and bacteria, it produces antibodies that target healthy tissue, leading to inflammation, swelling, and damage.
The term “lupus” commonly refers to systemic lupus erythematosus, or SLE, which accounts for 70% of all lupus cases. Some people also have cutaneous lupus erythematosus, a type of lupus that affects the skin.
People with lupus may experience an array of symptoms. Some common ones include unexplained fever, fatigue, joint pain, or rash. All of these can easily be confused with any number of illnesses. If not closely managed, lupus can leave a trail of damage in its wake.
Some people have symptoms that persist over long stretches of time, while others see their symptoms subside or disappear for a while (this is considered a remission), only to flare again later on. The type and severity of lupus symptoms can vary, as can the frequency of flares. In other words, one patient’s experience with the disease can be entirely different from someone else’s.
Some people have lupus that affects a single body system—say, the skin or joints. In others, lupus leaves its mark across multiple body systems, such as the kidneys, heart, lungs, blood, blood vessels, and brain.
A butterfly-shaped rash stretching from cheek to cheek across the bridge of the nose is a hallmark of lupus.
The kidneys are particularly vulnerable in people with lupus. When the kidneys aren’t functioning properly, people can develop swelling around the ankles and eyes (edema), blood in the urine, or weigh gain.
Some people have pain when breathing, a possible sign of inflammation of the lining of the chest.
Signs of lupus include:
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Scientists don’t know exactly what causes lupus, but they think genetics may play a role. More than 100 genes have been linked to lupus, yet no single gene or combination of genes has been identified as the culprit. Some people appear to be at increased risk of developing lupus if a family member has it. It can also occur in people with no family history (although some family members may have other autoimmune conditions). The disease is more common in certain ethnic groups, especially African-Americans, Hispanics, Native Americans, and Asians.
One theory is that environmental factors flip the switch that sets off lupus in people who are already genetically susceptible. Researchers have yet to pinpoint the exact factors, but possible triggers include:
Some scientists suspect hormones—the body’s chemical messengers—may be involved in the disease process in some way. About 90% of lupus patients are women, mostly in their childbearing years, and many of them experience more symptoms of lupus in pregnancy or before their menstrual periods. However, more research on this is needed.
You cannot usually tell whether or not someone has lupus based on physical appearance alone. Many signs and symptoms of the disease, such as a fever, are non-specific. Plus, some symptoms, like joint pain, imitate other illnesses. Often, the toll lupus takes on the body isn’t outwardly visible.
However, there are a few telltale signs, especially in lupus patients who develop skin symptoms or have the form of lupus that only affects the skin, called cutaneous lupus erythematosus.
Perhaps the most well known is a red rash (called a malar rash) that appears in the form of a butterfly across a person’s nose and cheeks.
Some people develop red, raised, disk-shaped patches (a discoid rash), especially the face and scalp.
As many as one in three lupus patients with the most common form of the disease (systemic lupus erythematosus, or SLE) develop a condition called Raynaud’s disease. Blood vessels in their fingers and toes constrict in response to cold or stress. The digits turn pale white or purplish blue as they lose blood flow.
Lupus sufferers who experience joint pain may have visible redness and swelling in the fingers, wrists, elbows, knees, ankles, or toes.
There is no single diagnostic test to confirm whether someone has lupus. Doctors rely on a combination of tools, including a medical history and physical exam, blood tests, urinalysis, and kidney biopsy. Because of this, it can take months or years for someone to get a lupus diagnosis.
The American College of Rheumatology (ACR) has identified 11 common signs of lupus to help doctors diagnose the condition. Usually, a person with four or more of these problems, either currently or in the past, may have the systemic form of lupus.
The ACR tells doctors to look for butterfly and discoid rashes; photosensitivity (meaning a skin rash that develops due to sun exposure); mouth or nose sores; arthritic pain with tenderness or swelling in two or more joints; swelling in the lining of the heart or lungs; a neurologic problem (such as seizure or psychosis); a kidney disorder (such as excessive protein in the urine); a blood disorder (such as anemia); and other blood abnormalities.
Blood tests can detect the presence of certain antibodies associated with lupus. An antinuclear antibody (ANA) test, for example, screens for proteins that cause the body to begin attacking itself. However, a positive ANA test doesn’t necessarily mean someone has lupus.
Since there’s no cure, getting a lupus diagnosis and starting treatment as soon as possible in the key to keeping lupus under control. Since every person’s lupus is different, treatment regimens are tailor-made to the patient. In general, doctors prescribe medicines to alleviate symptoms, prevent flare-ups, and minimize organ damage.
Anti-inflammatory medicines like as aspirin, acetaminophen (Tylenol), ibuprofen (Motrin and Advil), and naproxen sodium (Aleve) are recommended to ease pain and fever, for example.
Corticosteroids such as prednisone may be given to lessen the pain and swelling of inflammation in the body.
Medicines for treating malaria have been shown to be effective in decreasing production of antibodies that attack the body’s own organs and tissues.
Other treatments can be prescribed to quiet the immune system and minimize the toll of lupus on the body. Immune-suppressing drugs are helpful when steroids fail to control symptoms or when patients cannot tolerate high doses of steroids. However, people taking immunosuppressants must be closely monitored because these drugs reduce the body’s ability to fight infections.
Lupus patients at risk of blood clots may be given low-dose aspirin or prescription warfarin or heparin.
Belimumab (Benlysta) is the first new drug approved by the U.S. Food and Drug Administration (FDA) specifically to treat people with lupus. However, it’s not for everyone with lupus and has side effects.
A number of public figures have lupus, and many have opened up about what it’s like to live with the autoimmune disease. One of the most outspoken is singer Selena Gomez, who revealed in 2015 that she had taken time off to undergo treatment for lupus a few years earlier. “I was diagnosed with lupus, and I’ve been through chemotherapy,” Gomez told Billboard. “That’s what my break was really about.” Since then, Gomez has also raised awareness for mental health issues which can be triggered by lupus, such as anxiety and depression.
“I’ve discovered that anxiety, panic attacks, and depression can be side effects of lupus, which can present their own challenges,” Gomez said to People in an exclusive statement in 2016.
Actor and TV personality Nick Cannon also has lupus, and was hospitalized in late 2016 for complications from the autoimmune disease. Other celebrities with lupus include singer Toni Braxton, singer Seal, and the baseball player Tim Raines.
Many people struggle for years with vague or erratic symptoms before finally getting a diagnosis of lupus. Once you have been diagnosed with lupus, regular doctor visits are a must.
Managing lupus often entails having a team of doctors and nurses by your side. You may see a rheumatologist (who specializes in treating joint, soft tissue, and autoimmune diseases) or an immunologist versed in immune system disorders. Depending on your symptoms and complications, you may also see physicians who specialize in treating heart, kidney, lung, blood, hormone, skin, and nervous system issues.
You should see a doctor as soon as possible if your symptoms change or worsen, or if the medicine your doctor prescribed isn’t making you feel better. See a doctor immediately if you have severe abdominal pain; chest pain or shortness of breath; seizures; a new unexplained fever or high fever; excess bruising or bleeding; confusion or mood changes; or a combination or symptoms, such as severe headache, stiff neck, and fever.
The National Resource Center on Lupus offers tips for preparing for doctor visits. Start by knowing your medical history (keeping a journal of your symptoms and when they first appeared can help). Be prepared to answer specific questions about your symptoms. Know the names of all the medicines you take (not just lupus medication) and bring copies of medical records from other physicians, including imaging test results. Ask for a summary of your doctor’s orders and take notes. Ask questions and bring up any problems or concerns you have.
Currently, there is no cure for lupus. But there is hope. Scientists are grappling with key questions about what causes people to develop this autoimmune disease. Genetics clearly play some role, but inheritable traits only tell part of the story. What prompts the immune system to carry out its assault on healthy tissue and organs? Why do women develop lupus more often than men? And what can be done to better alleviate lupus symptoms?
One day, researchers hope to pinpoint lupus causes, predict lupus flares, pioneer better treatment options, and, hopefully, identity a lupus cure.
Until then, it’s important for patients to partner with their doctors about treatment plans. Medicines that ease pain, clear up rashes, reduce inflammation, and quell the immune system can help many lupus sufferers prevent and manage symptoms and stave off complications.
Maintaining a healthy lifestyle can also help people with lupus live life to the fullest. If you smoke, quitting can help (smoking can worsen the effects of lupus on the heart and blood vessels, and may complicate treatment). Likewise, a heart-healthy diet may be beneficial.
Getting adequate rest is important, too, since fatigue is a chronic problem for many people with lupus. (The National Sleep Foundation recommends 7 to 9 hours of sleep each day for adults; young children and teens require even more shuteye.)
Sun protection is another important step in managing lupus, since ultraviolet rays can trigger a symptom flare.
Regular exercise, time management, and relaxation strategies like meditation: All of these can help keep stress—another possible lupus trigger—at bay.
Lupus in children is as much of a mystery as in adults. In the beginning, the signs of trouble may be vague. Symptoms can appear then vanish, making it difficult to pinpoint the cause. Children can suffer for a longer period of time than adults before they get a diagnosis and, as a result, they may experience more health problems.
Depending on the body systems affected, lupus looks very different from one child to the next. Some symptoms, like hair loss or skin rashes, are visible and may be scary for children. Other symptoms, including aches and pains or memory loss, are less obvious (but just as concerning).
Raising a child or teen with lupus poses numerous challenges. You and your daughter or son will make regular trips to the doctor to keep the disease in check. It’s up to parents to make sure that their kids are eating a healthy diet, getting adequate sleep, and taking their medicines as directed.
Children should learn to recognize their symptoms and how to prevent symptom flare-ups. That may mean slathering on sunscreen and wearing hats and long-sleeved shirts to avoid sun exposure—a potential trigger of lupus symptoms.
There may be times that kids miss school activities or require a home tutor because of their illness. Still, parents should encourage their children to live life as normally as possible.
Lupus is not spread through viral or bacterial infections, and it’s not passed along from person to person through casual contact. Lupus is an autoimmune condition, meaning a person’s own immune system turns on itself. It begins attacking healthy tissue and organs as if fighting off some foreign invader. (There are dozens of autoimmune diseases, including multiple sclerosis, psoriasis, psoriatic arthritis, and rheumatoid arthritis.)
It’s not clear why the immune system goes rogue. It may be partly due to the genes that someone inherits. But family history alone doesn’t fully explain why some people develop lupus and others do not. Scientists think something must trigger the disease. Potential lupus triggers include ultraviolet light, cigarette smoke, certain infections, physical trauma, stress, and certain drugs. None have proven to directly cause lupus.
The key risk factors for lupus are gender, age, and race. Nine out of 10 cases involve women, although men get lupus, too. Most signs and symptoms of the disease appear between the ages of 15 and 45, but younger and older people can develop lupus as well. African-American women are more likely to have lupus than white women. The disease is also more prevalent in Hispanic, Asian, and Native American women.
Lupus has been called a family disease because it appears to have a hereditary component. Certain racial and ethnic groups, including people of African American, Hispanic, Asian and Native American descent, have a greater risk of developing lupus. That finding suggests that these groups share certain genes that predispose them to the disease.
But, so far, no single gene or group of groups has been implicated, and studies suggest a person’s genetic makeup may only be one factor in developing lupus. In the majority of lupus cases, patients have no known relative with lupus.
Who gets lupus may be partly determined by a person’s environment. Exposure to ultraviolet light, smoking, stress, and certain drugs may be triggers.
Anyone who suspects they have lupus should see a physician for an evaluation. Tell your doctor if you have a family history of lupus.
Lupus is not passed along like a virus. You cannot catch it from other people or transmit it through casual contact, but you may inherit a predisposition to it. Some people with lupus have a family history of the disease, but even those with an immediate family member with lupus don’t necessarily develop it. It is much more common in certain racial and ethnic groups, particularly African Americans, Hispanics, Asians and Native Americans.
How you get lupus isn’t entirely clear, but evidence suggests that a person’s genes, environment, and sex hormones could be involved in determining who gets lupus.
Researchers have identified over 100 genetic variations linked to lupus but no gene or combination that directly causes it. Some believe that certain environmental factors may have to be in play to “turn on” the disease.
For example, smoking may play a role. Other potential environmental triggers include ultraviolet light, certain drugs, infections, exhaustion, and mental or physical stress or trauma.
There may be a hormonal component, too, which would help to explain why lupus is much more common in women than men, especially women in their childbearing years