The Launch of #UnlockingLupus Campaign in Conjunction with World Lupus Day

Recently, I was invited to the launch of #UnlockingLupus campaign in conjunction with World Lupus Day which was held at GMBB Kuala Lumpur on the 26th of May 2023.

Lupus, also known as systemic lupus erythematosus (SLE), is a chronic autoimmune illness that challenges sufferers with a lifelong battle. Despite the fact that there are 43 occurrences of lupus per 100,000 people in Malaysia, the disease remains underdiagnosed, leaving lupus sufferers and their carers to fight the disease alone. The Malaysian SLE Association (PSLEM) and the Malaysian Society of Rheumatology (MSR) have teamed up with AstraZeneca to create #UnlockingLupus, a public awareness campaign focused on promoting early diagnosis and lupus awareness.

A collaboration formed to raise public awareness on lupus, a rare autoimmune disease.

The #UnlockingLupus campaign was launched in conjunction with World Lupus Day, and it was officiated by Dr. Izzuna Mudla Mohamed Ghazali, Deputy Director, Malaysian Health Technology Assessment Section, Medical Development Division, Ministry of Health. Also present were Dr. Heselynn Hussein, President of the Malaysian SLE Association; Dr. Syahrul Sazliyana, a rheumatologist at UKM; and a representative of the Malaysian Society of Rheumatology, and Bernice Chan, Chief Marketing Officer of AstraZeneca.

AstraZeneca is supporting the development of the microsite www.unlockinglupusmy.com that serves as the hub of the #UnlockingLupus campaign. The microsite acts as a one-stop resource for information on lupus, offering the general public resources for everything from diagnosis to therapy.

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.”

Dr. Heselynn Hussein, President of the Malaysian SLE Association

Dr. Heselynn claims that PSLEM has an SLE fund to which patients can apply for assistance. Lupus cannot be cured, but with the right care and support, the condition can be controlled. The various treatments assist in managing the "butterfly" flares while guaranteeing minimal organ damage, depending on the type and intensity of symptoms.

As part of its continued efforts to educate the public about lupus, PSLEM organised the "Walk-a-Payung for Lupus" event in conjunction with the recent World Lupus Day on May 10 with the help of AstraZeneca. The walk with umbrellas serves as a metaphor for the assistance and safety lupus patients need, as well as the effects lupus has on parents and their support network.

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.”

Dr. Syahrul Sazliyana, a rheumatologist at UKM

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 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.

Bernice Chan, Chief Marketing Officer of AstraZeneca.

Guest and media at the launch event can write their words of encouragement for the illness.

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.

Even though lupus is a lifelong battle, it may be managed with the right care and a supportive community. If you're interested to find out more information about lupus, you can visit www.unlockinglupusmy.com.

.: Peace Out :.