Shine a Light on Lupus #UnlockingLupus

Do you know that there is no cure for lupus? Systemic lupus erythematosus (SLE) or lupus, is a chronic autoimmune disease that presents a lifelong challenging fight for those affected. Although it is estimated that there are 43 cases of lupus per 100,000 people in Malaysia, many people are unaware of lupus, making it an underdiagnosed disease and a lonely battle for lupus patients and their caregivers. 

Official launch of Shine a Light on Lupus #UnlockingLupus campaign

To address this challenge, the Malaysian SLE Association (PSLEM) together with the Malaysian Society of Rheumatology (MSR) have partnered with AstraZeneca to launch #UnlockingLupus, a public campaign aimed at elevating awareness of lupus and driving early diagnosis.

I was privileged to attend the launch of Shine a Light on Lupus #UnlockingLupus campaign in conjunction with World Lupus Day and gained information about SLE. The campaign was officiated by Dr Izzuna Mudla Mohamed Ghazali, Deputy Director, Malaysian Health Technology Assessment Section, Medical Development Division, Ministry of Health, and attended by Dr Heselynn Hussein, President of the Malaysian SLE Association, Dr Syahrul Sazliyana, UKM Rheumatologist and a representative of the Malaysian Society of Rheumatology, and Bernice Chan, Chief Marketing Officer of AstraZeneca.

The #UnlockingLupus campaign is driven by a purposeful-built microsite (www.unlockinglupusmy.com) supported by AstraZeneca. The microsite serves as a one-stop information centre on lupus, providing the public with information on lupus and resources, ranging from diagnosis to treatment. 

Commenting on the campaign, Dr Heselynn Hussein shared, “From the physical symptoms to the emotional struggles that come with having lupus, it is a constant battle for patients with lupus, their caregivers and loved ones. We believe the best way to support them is to spread awareness through this collaborative campaign that shares more insights on lupus, and how the public can support the patients and caregivers.”

According to Dr Heselynn, PSLEM provides a SLE fund that patients can apply for support. Although there is no cure for lupus, the illness can be managed with proper treatment and support. Depending on the type and severity of symptoms, the available treatments help manage the ‘butterfly’ flares, while ensuring minimal damage to the organs. 

In conjunction with the recent World Lupus Day on 10 May, PSLEM had organised the 'Walk-a-Payung for Lupus” event, with the support of AstraZeneca, as part of its ongoing efforts to raise public awareness on lupus. The walk with umbrellas symbolises the support and protection needed for those with lupus, and the impact of lupus on parents and their support system. 

Dr Syahrul Sazliyana, UKM Rheumatologist and a representative of the Malaysian Society of Rheumatology

Dr Syahrul Sazliyana stated, “Our aim is to help patients be heard and supported in this silent battle. Living with lupus is challenging as it takes a toll on the body and mind. With the campaign microsite, we invite everyone to learn more about lupus, where a diagnosis can be challenging as the symptoms are often hidden away.”

Speaking from a patient perspective, Jean Chan, a 66-year-old lupus patient shared, “I have lived with lupus for the past 29 years and lupus has taught me to be resilient. To me, the most important factor to overcome this ill feeling of living with this debilitating disease is the continuous support, encouragement, care, and love to the patient.”

Bernice Chan, Chief Marketing Officer, AstraZeneca

Bernice Chan, Chief Marketing Officer, AstraZeneca explained, "Many living with lupus face challenges with diagnosis, unpredictable disease flares and limited care options. Globally, lupus places a heavy physical, emotional and financial burden on the 5 million people living with the condition. At AstraZeneca, we are working towards a future where people living with lupus have access to quality care. This goal is being advanced through scientific innovation, stronger collaboration with the lupus community, and an increased focus on health equity.

Through a partnership-driven approach, our aim is to work together with associations to empower the public with knowledge of this chronic illness, promote awareness of early diagnosis and seek treatment. Together, we can act on advancing the standard of care and ultimately, help those with lupus lead fuller lives,” Bernice further explained. 

Lupus is a lifelong battle that can be managed with proper treatment, and a supportive environment. To learn more about Shine a Light on Lupus #UnlockingLupus, please visit www.unlockinglupusmy.com