Vivy Yusof shares lupus struggle — what to know about the autoimmune disease

In a strikingly vulnerable entry of her weekly newsletter Sincerely, Vivy, FashionValet co-founder Vivy Yusof opened up about a personal struggle she has quietly endured for the past year: she has been diagnosed with Systemic Lupus Erythematosus (SLE), an autoimmune disease that has dramatically altered her life, and her body.

In the newsletter sent to subscribed readers only, she details what she thought was initially influenza turned out to be something far more serious. “I had all the classic flu symptoms, but the joint pain wouldn’t go away,” she wrote. Multiple hospital visits and tests later, doctors confirmed she had SLE.

In the post, she wrote about the whirlwind of press coverage, court appearances, and a barrage of online commentary amidst the controversy surrounding FashionValet. Vivy recalled reading articles about her legal woes only to stumble upon body-shaming comments questioning her “chubby” appearance.

She explained the visible puffiness and weight gain were side effects of the steroid treatment she had begun for lupus, which entails six pills a day.

So, what exactly is lupus? This silent, shapeshifting illness rarely gets the attention it deserves. SLE is a chronic autoimmune disease where the body’s immune system, designed to defend us against viruses and bacteria starts attacking healthy cells instead. The result? A lifelong rollercoaster of symptoms, medical appointments, and a need for relentless self-awareness.

While lupus can be found worldwide, it carries unique nuances in Malaysia. According to the Clinical Practice Guidelines on SLE published by the Health Ministry, this illness disproportionately affects women, particularly those aged between 15 and 44, and shows a higher prevalence among certain ethnic groups.

A study conducted in Kuala Lumpur noted that Chinese Malaysians had the highest rates of SLE at 57 per 100,000 population, followed by Malays at 33 per 100,000, and Indians at 14 per 100,000.

Globally, similar trends are echoed by the Lupus Foundation of America, which reports that lupus is more common among women of Asian, African American, Hispanic, and Native American descent.

But lupus isn’t just about numbers and immune cells—it’s a life-altering condition that presents itself in frustratingly elusive ways. Fatigue that doesn’t go away with rest, unexplained joint pain or swelling, and a distinctive butterfly-shaped rash across the cheeks and nose are some of the common red flags.

According to Mayo Clinic, patients might also experience skin lesions triggered by sunlight, shortness of breath, dry eyes, headaches, mouth ulcers, and memory fog—symptoms so varied and vague that they often lead to misdiagnosis.

The diagnosis of lupus is not straightforward. It typically requires blood tests, including the antinuclear antibody (ANA) test, and a clinical assessment of symptoms across multiple organ systems.

In Malaysia, the Health Ministry emphasises the importance of early diagnosis and continuous follow-up care. Once identified, the goal of treatment isn’t to cure, because there is no cure - but to manage symptoms, prevent flare-ups, and slow down the damage.

Beyond medication, lifestyle changes are considered essential in managing lupus. Patients are advised to reduce sun exposure, eat a nutritious diet, and practice good stress management, all of which can help reduce the likelihood of a flare-up.

Smoking cessation is also highly recommended, as tobacco can worsen the condition and increase cardiovascular risks. The Ministry’s guidelines also encourage frequent consultations with rheumatologists and regular monitoring, as lupus can sneakily affect the kidneys, heart, lungs, and brain over time.

And then there’s the emotional toll. Living with lupus can impair one’s ability to maintain work productivity, manage household responsibilities, or simply enjoy daily life. A 2020 study found that unmanaged SLE had a direct impact on a patient’s lifestyle, affecting everything from mobility to mental health.

For many Malaysians, especially in rural areas or low-income brackets, the lupus journey often begins in silence and confusion. Health authorities are urging individuals not to wait for severe symptoms to emerge. Regular health check-ups can detect not just lupus, but other underlying conditions as well.

As Malaysia's healthcare system continues to evolve with better diagnostics and public education, lupus doesn’t have to be a mystery. It is manageable. It is survivable. And most importantly, it is not the end of the road. With informed care, support, and resilience, those living with SLE can lead fulfilling, empowered lives.