There is a condition that affects an estimated 1.5 million people in the U.S., yet 66% of people in the U.S. haven’t even heard of it. This condition is chronic and can be debilitating during a flare-up. What is this mysterious condition? It’s lupus, a chronic autoimmune disorder that is little known and largely misunderstood. May is Lupus Awareness Month, with a focus on raising awareness and funds for research and education. What is lupus, what are the different types of lupus, what are the causes and risk factors, and how do you get a lupus diagnosis?

What is lupus?

Lupus is a chronic disorder of the autoimmune system. The immune system is designed to protect your body from foreign germs, viruses, and unhealthy bacteria that could do harm to your skin, organs, and tissues. When someone has lupus, their immune system goes on high alert, unable to tell the difference between healthy tissue and threatening bacteria. Autoantibodies that attack the healthy tissue are created, causing pain, inflammation, and damage to the body.

Lupus symptoms

Symptoms of lupus vary depending on how the condition manifests itself in the patient’s body. One tell-tale sign of lupus is also a very public sign: a butterfly-shaped rash that spreads over the nose and cheeks.

Other symptoms of lupus include:

• Fatigue
• Fever of unknown origin
• Sensitivity to light (photosensitivity)
• Skin lesions
• Shortness of breath
• Joint pain
• Joint stiffness
• Joint swelling
• Chest pain when breathing deeply
• Headache
• Cognitive difficulty, including confusion and memory loss
• Dry eyes
• Swollen glands
• Ulcers, especially in the mouth
• Swelling in the legs and around the eyes
• White or purple extremities (fingers and toes)

Some people experience anemia (low red blood cell count), syncope (dizziness and fainting), sadness, or seizures.

Symptoms may come and go. Lupus is a condition characterized by flare-ups when symptoms are severe and remission when all symptoms may disappear.

Lupus causes and risk factors

Causes of lupus are not well-known. For some people, there may be a genetic link in that they have a predisposition to an overactive immune system, perhaps inherited from a family member.

Other causes may include:

• Exposure to sunlight: Specifically for those with a genetic susceptibility, sunlight may be a trigger for a lupus diagnosis
• Infection: There are certain types of infections that can cause the autoimmune system to kick into overdrive
• Medications: As explained below, some medications may cause a particular type of drug-induced lupus

Lupus occurs primarily in women between the ages of 15 and 44. African American women are two to three times more likely to develop lupus, and Hispanic women are also at increased risk.

Types of lupus

Although all types of lupus share some similarities as far as initial symptoms go, there are different types of lupus, each with their own set of complications, symptoms, and presentations. Understanding the answer to the question “What is lupus” is in understanding these different types.

• Systemic lupus erythematosus (SLE): SLE is exactly what it sounds like. This is the most common type of lupus and is what people are referring to when they think or talk about lupus. This type of lupus affects every system of the body, causing inflammation and symptoms indiscriminately.
• Discoid lupus erythematosus: Discoid lupus erythematosus is characterized by a red, raised rash that can appear anywhere on the body but most commonly occurs on the face or scalp. Over time, this rash may become thick, produce scaly skin, and scar. As with other types of lupus, symptoms of discoid lupus erythematosus can come and go, lasting for days or years. Some people with this type of lupus may also have or develop SLE later.
• Subacute cutaneous lupus erythematosus: This type of lupus also features lesions, but only those that appear in the sun. They do not generally cause scarring.
• Drug-induced lupus:  Some anti-seizure medications, high blood pressure medications, antibiotics and antifungals, thyroid medications, and oral contraceptive pills can cause lupus. Drug-induced lupus has similar symptoms to SLE, but the symptoms generally resolve once the drug is stopped.
• Neonatal lupus: This is the rarest form of lupus.  Women with SLE or Sjögren’s syndrome may pass along autoantibodies in their blood called anti-Ro (SSA) and anti-La (SSB). These autoantibodies attack the new tissues of the mother’s body as well as the fetus. When these babies are born, they may have a skin rash, liver problems, and low blood counts. In some cases, infants may develop a congenital heart block that can be life-threatening. Mothers with SLE can experience flare-ups caused by pregnancy, which can increase the chances of neonatal lupus.

Lupus diagnosis

Because lupus presents with similar symptoms of other disorders, getting a lupus diagnosis can be very difficult. Doctors will take a thorough medical history and perform a complete medical exam.

There is no one test that yields a positive lupus diagnosis, but the following tests can use process of elimination and help gather more information that might lead to a diagnosis:

• Complete blood count (CBC): A CBC measures white blood cells, red blood cells, platelets, and hemoglobin. Changes in these numbers can indicate the potential for lupus.
• Erythrocyte sedimentation rate: The sedimentation rate measures the speed at which red blood cells settle to the bottom of a test tube. Many inflammatory conditions, including lupus, have a faster rate of sedimentation.
• Kidney and liver assessment: The longer a person has lupus, the higher the likelihood that major organs such as kidneys and liver will be damaged. These blood tests look for poor function in these organs that may lead to a lupus diagnosis.
• Urinalysis: Increased protein level or red blood cells in the urine may occur if lupus has affected your kidneys.
• Antinuclear antibody (ANA) test: Stimulated immune systems produce ANAs. This test can be misleading, though. The majority of people with lupus have these antibodies, but not everyone with these antibodies has lupus. Generally, the presence of ANAs indicates a need for further testing.

Doctors may recommend consulting with specialists like rheumatologists and immunologists if a lupus diagnosis is suspected.

This May, as Lupus Awareness Month tries to help people answer the question “What is lupus?” take a moment to read about the ten early warning signs of lupus and share them with those you love.

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