PETALING JAYA: More Malaysians are being diagnosed with SLE or lupus – not because the disease is more prevalent but because doctors are now better at detecting its elusive symptoms, says Malaysia SLE Association president Prof Dr Syahrul Sazliyana Shaharir.
“The rise is likely due to improved awareness among primary care doctors and other specialists about the diversity of lupus presentations and organ involvement,” she said.
Yet public awareness remains weak compared with cancer or diabetes.
“Lupus is mainly managed by rheumatologists or nephrologists, so it doesn’t get the same spotlight.”
Asked if general practitioners can catch early signs, Syahrul said many are now better equipped.
“Yes, especially those who attend seminars, workshops or conferences on autoimmune diseases. But the bigger challenge is access to specialists.
“Malaysia still does not have enough, though both the Health Ministry and the Higher Education Ministry are working to address this.”
Syahrul said treatment often involves steroids – life-saving in critical situations – along with immunosuppressants and biologics.
“Costs can be prohibitive but government facilities cover most medications, easing the financial load for patients,” she added. For association executive secretary Illani Azalia Zainal Abidin, lupus is not just a medical condition but a daily battle that extends far beyond the hospital.
The 32-year-old said medication kept her illness under control but the real struggle lay in emotional support and finances.
“People don’t understand what we go through,” she said.
“Sometimes you just need someone to talk to.”
Regular therapy sessions remain essential and she credits the association’s monthly online “shared-care” meetings, where patients nationwide connect virtually to reduce the sense of isolation.
“But staying alive is expensive. Even basic drugs such as the immunosuppressant mycophenolate (CellCept) can be costly and public hospitals occasionally face shortages,” she said.
“You relearn how to live. Camping, hiking, the things I love most are not on the cards anymore unless I plan every detail.”
Employment adds another layer of difficulty.
Many employers quietly avoid hiring people with lifelong conditions that require frequent hospital visits.
“I understand their concerns, but it’s disheartening. It has been very hard for me to find new jobs.”
One former supervisor, however, stood out for his support – asking what adjustments she needed, offering indoor parking to shield her from the sun and even paying for it. Insurance coverage, however, remained out of reach.
Family planning is equally fraught. Pregnancy is possible but risky for both mother and child.
She recalled friends who made difficult choices.
One had three children, two of whom developed lupus – highlighting the complex mix of genetic and environmental factors still not fully understood.
Stigma, too, deepens the struggle. Because lupus is often labelled a “women’s disease”, men may delay seeking treatment, despite typically experiencing more severe complications.
She hopes workplaces will evolve to support lupus patients rather than shut them out.
“Employers should learn how to support staff with chronic illness instead of turning them away,” she said.
Flexible hours, understanding about medical leave and clear policies could help patients remain productive while protecting their health.
Despite the challenges, Illani remains determined.
“Therapy gives me the tools to stay functional,” she said.
“And being part of the association shows me people can return to work, raise families and live fully – even after the worst flare-ups.”
