10 Interesting Facts About Lupus

Systemic lupus erythematosus is a chronic autoimmune disease where the immune system mistakenly attacks healthy tissues, causing inflammation, pain and damage to various organs, including but not limited to the skin, joints, kidneys and heart. Symptoms vary widely among patients but often include fatigue, joint pain, rashes (especially the malar rash seen on the face) and sensitivity to sunlight. While there is no cure, lupus can be managed with medications and lifestyle adjustments to reduce flare-ups and prevent organ damage.

10 Facts About Systemic Lupus

1. The majority of people with lupus are women. 

Approximately 9 out of 10 (90%) of people diagnosed with lupus are women, especially women of childbearing age, when estrogen levels are at their highest. While there's a number of factors that can contribute to the development of lupus, scientists believe there is a direct link between hormones and the development of lupus. 

Men are much less likely to develop lupus than women however men tend to have more serious organ involvement than women. 

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2. Lupus is called the "Great Imitator". 

Unfortunately lupus can be difficult to diagnose as it often mimics other diseases, skin disorders and neurological conditions. Lupus is a widespread disease that often affects the skin, joints & organs so it can be mistaken for other disorders like rosacea, fibromyalgia & Lyme Disease. 

Lupus can also have very similar symptoms to other autoimmune diseases like Rheumatoid Arthritis & Sjögren's Syndrome making it difficult to narrow down the exact autoimmune disease that a person may be afflicted with. 

3. Approximately 50% of lupus patients get malar rashes. 

A malar rash, often referred to as a "butterfly rash" due to the shape it makes on the cheeks, is one of the most commonly seen symptoms in people with lupus. Approximately half of all lupus patients will develop a malar rash at some point, especially after exposure to the sun.

For some people, a malar rash may only last for a few hours, for others their butterfly rash may last for months at a time. Malar rashes can vary greatly in appearance from person to person and may be flat or raised, warm and scaly. Rashes can be pink, red, or purple and may occasionally include sores. These rashes may be painful, burning and itchy. 

4. 60% of people with lupus have some form of sun sensitivity.

Sun sensitivity, also known as photosensitivity (or a "sun allergy") is seen is about 60% of all people with lupus. The reasons for sun sensitivity in people living with lupus is unclear, however scientists believe that UV rays may trigger an immune response in those with lupus. 

Symptoms of lupus photosensitivity may include: facial and other skin rashes, skin lesions, fevers and even damage to internal organs. People living with lupus should be careful when going out in the sun. It's important to wear sunscreen, long sleeves & pants and wide brimmed hats. If possible, only go outside when the UV index is low. 

5. There is no one test to diagnose lupus. 

Unfortunately systemic lupus can be difficult to diagnose as there isn't one single test. If your doctor suspects you may have lupus, they will run blood tests like ANA, anti-dsDNA, CBC, comprehensive metabolic panel and other antibody tests like SSA/SSB, rheumatoid factor (RF), etc. to rule out other similar autoimmune disorders. Your doctor will also likely test your urine to check for kidney issues and may perform x-rays and skin biopsies as well.

Making a lupus diagnosis requires analyzing your whole medical history and symptoms. 

6. There have only been 3 drugs developed specifically for the treatment of lupus. 

Lupus affects approximately 1.5 million Americans and yet there have only ever been 3 drugs developed for the treatment of lupus in the United States. These drugs include: Benlysta (belimumab) a subcutaneous injection or intravenous infusion, Saphnelo (anifrolumab), and intravenous infusion and Lupkynis (voclosporin) an oral medication for the treatment of lupus nephritis. 

The good news is there are currently many active clinical trials to study potential new treatment options for lupus. 

7. There is no cure for lupus. 

Unfortunately there is no cure for lupus, yet

Although lupus has no cure, it can be managed with medications such as corticosteroids, immunosuppressants and biologics to control symptoms and prevent organ damage. That's why organizations like the Lupus Research Alliance are so important to continue research and hopefully one day, find a cure. 

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8. Kidney involvement is common in lupus. 

Approximately half of people with systemic lupus will end up developing lupus nephritis and 30% of people with lupus nephritis will end up in kidney failure. Lupus nephritis is a serious condition where the kidneys become inflamed, which can lead to kidney damage or failure if not treated properly.

If you're diagnosed with lupus it's important to regularly attend your rheumatologist appointments so that if you do develop nephritis, it's discovered early. 

 9. There are four main types of lupus. 

While systemic lupus erythematosus is the most commonly known form of lupus, there are actually 4 main types of lupus. 

  • Systemic Lupus Erythematosus (SLE): This is the most serious form of lupus which can affect the skin, joints and organs like the kidneys and the heart. Symptoms of SLE can vary widely from person to person. 
  • Cutaneous Lupus Erythematosus (CLE): This type primarily affects the skin and can cause rashes, lesions, or sores, often triggered by sun exposure. There are different subtypes of CLE, such as discoid lupus (which causes round, raised lesions) and subacute cutaneous lupus (which can cause scaly red patches). Some people have both systemic lupus and cutaneous lupus at the same time. 
  • Drug-Induced Lupus (DIL): Caused by certain medications, this type mimics the symptoms of systemic lupus but is typically less severe. Common medications linked to drug-induced lupus include hydralazine (for high blood pressure) and procainamide (for irregular heart rhythms). Symptoms usually resolve once the medication is discontinued.
  • Neonatal Lupus: A rare condition that affects newborns of mothers with lupus, especially those with certain autoantibodies such as anti-Ro (SSA) and anti-La (SSB). Babies with neonatal lupus may experience skin rashes, liver problems, or a heart condition called congenital heart block, but symptoms usually resolve over time.

10. Comorbidities are common in people with systemic lupus. 

Comorbidities, the existence of more than one disease or condition within your body at the same time, are commonly seen in people with lupus. Some of the more common comorbidities include, but are not limited to: 

  • Fibromyalgia
  • Raynaud's Phenomenon
  • Thyroid disorders
  • Rheumatoid Arthritis 
  • Antiphospholipid Syndrome
  • Cardiovascular disorders
  • and more

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