Lupus is a chronic autoimmune condition that affects thousands of people in the UK, yet it remains widely misunderstood.

Because its symptoms can vary greatly and often mimic other illnesses, lupus can take years to diagnose.

With World Lupus Day taking place this May, we look at the symptoms, potential causes and risk factors of lupus.

What is lupus?

Lupus is an autoimmune disease. This means the immune system, normally responsible for protecting the body from infections, mistakenly attacks healthy tissues and organs.

The most common form is Systemic Lupus Erythematosus (SLE) which can affect multiple parts of the body including the skin, joints, kidneys, heart, lungs and brain.

Other types of lupus include:

• Cutaneous lupus – primarily affects the skin.
• Drug-induced lupus – Triggered by certain medications and usually resolves once the medication is stopped.
• Neonatal lupus -A rare condition affecting newborn babies of mothers with certain antibodies.

Lupus can range from mild to life-threatening, depending on which organs are affected.

What causes lupus?

The exact cause of lupus is still not fully understood. A person may have a genetic tendency toward autoimmune disease, but the condition may only develop after exposure to certain triggers.

Recent research indicates that the Epstein-Barr virus (EBV), the common childhood illness which causes glandular fever, is a significant trigger for SLE. EBV can cause immune cells to go rogue and mistakenly attack the body’s own tissues.

Other potential triggers include:

• Sunlight and UV Exposure: Ultraviolet (UV) light can trigger immune reactions in the skin and worsen symptoms in many people with lupus.
• Medications: Certain medications may cause drug-induced lupus in some individuals. This form usually resolves once the medication is stopped.
• Stress: High levels of chronic stress may contribute to immune system dysregulation and trigger disease flares.
• Smoking: Smoking has been linked to an increased risk of developing lupus and may worsen disease severity.

Who can develop lupus?

Lupus can affect anyone, but some groups are more at risk.

Around 90 percent of people diagnosed with lupus are women, most commonly between the ages of 15 and 45. Scientists believe female hormones during puberty, pregnancy or menopause may influence immune responses, making women more susceptible to autoimmune diseases.

Genetics can play an important role in lupus risk. People who have relatives with lupus or other autoimmune conditions may have a higher chance of developing the disease.

Studies also show lupus occurs more frequently and often more severely in certain populations, including people of African, Caribbean, Asian or Chinese descent.

People who already have autoimmune disorders, such as thyroid disease or rheumatoid arthritis, may also have a higher likelihood of developing lupus because of underlying immune system dysregulation.

Common symptoms of lupus

One of the biggest challenges with lupus is that symptoms can come and go, often appearing in ‘flares’ followed by periods of remission.

Symptoms vary widely but may include:

• Extreme Fatigue: Persistent exhaustion that doesn’t improve with rest is one of the most common symptoms reported by people with lupus.
• Joint Pain and Swelling: Pain, stiffness, and swelling in the joints, particularly in the hands, wrists and knees.
• Skin Rashes: A distinctive butterfly-shaped rash across the cheeks and nose is one of the most recognisable signs of lupus, although not everyone develops it.
• Sensitivity to Sunlight: Many people with lupus experience worsening symptoms or skin reactions after sun exposure.
• Fever: Low-grade fevers may occur during disease flares.
• Hair Loss: Hair thinning or hair loss can occur due to inflammation affecting the scalp.
• Chest Pain or Breathing Problems: Inflammation around the lungs or heart may cause chest pain or shortness of breath.
• Cognitive Difficulties: Some people experience memory problems, confusion, or difficulty concentrating, sometimes referred to as ‘lupus fog’.

Why lupus is difficult to diagnose

Lupus is sometimes called ‘the great imitator’ because its symptoms resemble many other conditions, including rheumatoid arthritis, chronic fatigue syndrome and fibromyalgia.

There is no single test that can diagnose lupus and it often requires careful evaluation over time. Doctors typically consider things like your medical history and physical symptoms, as well as tests such as antinuclear antibody tests, urine tests and imaging or biopsies if organs are affected.

Living with lupus

Although lupus currently has no cure, many people manage the condition successfully with treatment and lifestyle adjustments.

Treatment may include:

• Anti-inflammatory medications
• Immune-suppressing drugs
• Antimalarial medications
• Steroids to control inflammation

Lifestyle changes can also help manage symptoms, including adopting an anti-inflammatory diet, protecting skin from sun exposure, managing stress and getting adequate rest.

Because lupus symptoms are often invisible or misunderstood, people living with the condition may face delays in diagnosis, lack of support and challenges in daily life.

If you or someone you know experiences persistent fatigue, unexplained joint pain, skin rashes, or other unusual symptoms, it is important to seek medical advice.