Why lupus diagnoses are rising, and why young women face greater risk

Better awareness and testing have pushed lupus numbers up, but the gender gap remains stark, and delayed diagnosis continues to put women of reproductive age at the highest risk

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Lupus, long known as the “great imitator", is being recognised more often than ever, especially among young women. Doctors say this rise isn’t just because the disease is becoming more common, but because health systems and patients are finally spotting it earlier. Yet many still slip through the cracks for months, even years, before getting the right diagnosis.

 

At the same time, modern environmental triggers, lifestyle shifts and hormonal influences are adding to the risk pool, making early recognition and timely treatment more important than ever.

 

Why diagnoses are increasing

 

Doctors say multiple overlapping trends are pushing numbers upward:

 

Earlier testing & better guidelines: Classification rules updated in 2019 and wider use of ANA (Antinuclear Antibody) screening mean more cases are caught sooner.

Greater access: The number of people having access to tertiary care has increased, notes Dr Yathish, leading to more recorded diagnoses.

Environmental stressors: Pollution, UV exposure, smoking/vaping, low vitamin D and obesity all nudge the immune system toward autoimmunity.

Infections & stress: Triggers such as Epstein–Barr virus and pandemic-related stress may unmask disease earlier.

Data effects: Health systems now capture autoimmune conditions more efficiently.

 

Dr Anurag Aggarwal, consultant, Internal Medicine, Fortis Escorts Hospital, Faridabad, adds that longer survival with lupus also increases overall prevalence, “More people are living with the disease at any one time due to modern treatments.”

 

Why the gender gap persists

 

Lupus affects all genders, but women, especially those aged 15–45, remain disproportionately affected.

 

“Most studies show women make up 80 per cent or more of SLE (systemic lupus erythematosus) patients, with female-to-male ratios as high as 9–14:1,” says  Dr Yathish G C, lead consultant – Rheumatology, Aster Whitefield Hospital. This means that for every 10 to 15 people diagnosed with lupus, only 1 is male, the rest are women. The reasons are:

 

• Female hormones like estrogen tend to make the immune system more reactive, increasing the risk of autoimmune diseases.
• Genes on the X chromosome influence immune regulation. Since women have two X chromosomes, their baseline risk is higher.

 

Why early symptoms are missed

 

Lupus often begins with vague signs such as fatigue, aches, low-grade fevers, rashes that come and go, hair loss, making it easy to misdiagnose.

 

According to Dr Yathish, patients frequently see multiple clinicians before reaching a specialist. Delayed diagnosis leads to higher rates of kidney failure, severe organ damage, blood clots, pregnancy complications and long-term steroid side effects.

 

Seek evaluation if several symptoms persist beyond six weeks:

 

• Persistent joint pain or morning stiffness
• Photosensitive rashes (especially across cheeks and nose)
• Unexplained fatigue or intermittent fevers
• Significant hair loss, mouth ulcers
• Kidney red flags: swollen legs, foamy urine, high blood pressure
• Neurological signs: headaches, brain fog, seizures
• Easy bruising, repeated miscarriages or blood clots

 

How lupus is diagnosed

 

Doctors avoid testing healthy individuals, but in people with symptoms, the process is stepwise:

 

• ANA test - first-line screening; highly sensitive but not specific.
• Confirmatory tests - anti-dsDNA, anti-Smith antibodies, complement levels, CBC, kidney and liver tests.
• If pregnancy loss or clots - antiphospholipid antibody panel.
• Suspected kidney disease - kidney biopsy.

Diagnosis is made by a combination of symptoms, labs and physical examination, and not a single test.

 

Timely management of lupus

 

Treatment today focuses on calming the immune system while protecting organs:

 

• Hydroxychloroquine for almost everyone. It helps keep the disease calm and prevents flares.
• Short courses of steroids during flare-ups to control inflammation quickly.
• Immunosuppressants like methotrexate, azathioprine or mycophenolate when joints, skin or organs are involved.
• Biologics such as belimumab or anifrolumab for tougher or more severe cases.
• Ongoing monitoring with regular blood/urine tests, yearly eye exams, strict sun protection, and no smoking to reduce flare risks.

 

Celebrities who have spotlighted lupus

 

Public figures speaking openly about lupus have helped boost awareness and normalise conversations around autoimmune disease.

 

• Selena Gomez, American singer and actor, has shared her experience with lupus and lupus nephritis, including undergoing a kidney transplant.
• Lady Gaga, global singer-songwriter and actor, has revealed she tests positive for lupus antibodies and has openly discussed her chronic pain.
• Toni Braxton, Grammy-winning American singer, has spoken about living with lupus and how it has affected her heart health.
• In India, actors Chhavi Mittal and Sherlyn Chopra have publicly spoken about dealing with SLE and raising awareness about the often-invisible nature of the disease.

 

Also read: Autoimmune illnesses spread quietly: Experts share early signs to watch for

 

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This report is for informational purposes only and is not a substitute for professional medical advice.