May is Lupus Awareness Month and serves as a reminder that this disease, despite affecting millions of people globally, still does not receive the level of public attention or research funding it deserves.

Lupus is more common than many people realise. It is estimated that at least 50 out of 100 000 people worldwide are living with some form of lupus. It disproportionately affects women, who account for about 90% of cases, most commonly during their childbearing years (ages 15 to 44). However, men, children, and older adults can also develop lupus.

Prof Barend Jansen van Rensburg, Clinic Head for Rheumatology in the Department of Internal Medicine, University of the Free State (UFS), says lupus is a chronic autoimmune disease in which the immune system loses tolerance for the body's own tissues and launches an inflammatory assault on them. This attack can target almost any part of the body – the skin, joints, kidneys, heart, lungs, brain, and blood cells.

“Imagine your body's security system – the immune system – suddenly turns on you. Instead of fighting off viruses and bacteria, it starts attacking your own healthy cells and organs. That is lupus in a nutshell.

“The most common form is called Systemic Lupus Erythematosus (SLE), which can affect multiple organ systems. Other forms include cutaneous lupus (affecting mainly the skin), drug-induced lupus (triggered by certain medications), and neonatal lupus (which can affect newborns of mothers with the disease),” explains Prof Jansen van Rensburg. 

A lifelong, chronic condition

According to him, scientists have not pinpointed a single cause, but it is widely believed that lupus results from a combination of three interacting factors: genetics, hormones and environmental triggers. There is currently no cure, but the good news is that it can be effectively managed. Treatment is highly personalised, depending on which organs are affected and how severe the disease is. The main goals are to reduce inflammation, prevent flares, and protect organs from long-term damage.

Lupus is a lifelong, chronic condition; it does not go away. However, the experience of living with lupus varies enormously from person to person. Some people have mild disease that is relatively easy to manage; others face severe, life-threatening complications.

“The disease tends to cycle between flares (when symptoms worsen) and remissions (when symptoms ease or disappear). With proper treatment and monitoring, many people achieve long periods of remission and maintain a good quality of life.

“It is important to understand that remission is not the same as being cured. The underlying disease process is still present, and symptoms can return if treatment is stopped or a trigger is encountered. Regular medical check-ups, even during quiet periods, are essential to catch any organ damage early, especially the kidneys, where regular checks for protein and blood in the urine should be done.” 

Could lead to death 

Prof Jansen van Rensburg says lupus can be life-threatening, with estimates suggesting that between 10% and 15% of people with lupus may die prematurely due to complications of the disease. Studies have found that mortality rates among people with lupus are roughly two to three times higher than in the general population, particularly in younger patients.

Lupus has even been identified among the top 20 leading causes of death in females between the ages of five and 64.

The most common causes of lupus-related death today are cardiovascular disease (heart attacks and strokes, driven by chronic inflammation) and serious infections (partly because the immune system is suppressed by both the disease itself and its treatments). Severe kidney damage from lupus nephritis is another major life-threatening complication.

The outlook, however, says Prof Jansen van Rensburg, has improved dramatically over the decades. With today's treatments and early diagnosis, five-year and eight-year survival rates are around 91% and 89% respectively. Many people with lupus now live long, full lives – but vigilance, consistent treatment, and close medical care remain critical.

Symptoms

Lupus, also called the “great imitator” because its symptoms closely mimic those of many other illnesses, making it notoriously difficult to recognise. Symptoms can come and go unpredictably in episodes called flares, followed by quieter periods called remissions. Every patient is unique and the disease presents itself in different ways.

Common symptoms include extreme fatigue, joint pain, skin rashes, sensitivity to sunlight (which can trigger or worsen rashes and flares), fever with no obvious cause, and hair loss. Other symptoms include chest pain when breathing deeply (caused by inflammation around the lungs or heart), kidney problems (lupus nephritis is a particularly serious complication, detectable through changes in urine or swelling in the hands and feet), brain fog, headaches, confusion, or memory difficulties, anaemia and abnormal blood clotting. 

Challenges in diagnosing lupus

“Diagnosing lupus is one of medicine's more humbling challenges, and many patients describe long, frustrating journeys before receiving an accurate diagnosis. On average, it takes nearly six years from the time someone first notices symptoms to receiving a lupus diagnosis. A majority of lupus patients (about 63%) report being incorrectly diagnosed at least once along the way.”

Prof Jansen van Rensburg says no single definitive test exists. Diagnosis is based on a combination of symptoms, physical examination, blood tests (including ANA – antinuclear antibody – tests), and sometimes tissue biopsies. Doctors typically look for at least several criteria to be met. Furthermore, he says, because symptoms overlap with conditions like rheumatoid arthritis, multiple sclerosis, thyroid disease, and even depression, lupus often gets ruled out last. These symptoms are also unpredictable. They can come and go, vary in severity, and shift from one organ system to another – making the pattern hard to see unless tracked over time.

Awareness matters

Diagnostic delays are not trivial as every year without a correct diagnosis is a year without proper treatment, during which silent organ damage can accumulate. “Awareness matters because it shortens the road to diagnosis. It helps patients get taken seriously sooner. It reduces the loneliness that comes from having an illness few people understand. And it puts pressure on researchers, policymakers, and healthcare systems to invest more in finding better treatments – and one day, a cure.