SLE campaign aims to help improve lives of patients, caregivers

Systemic lupus erythematosus (SLE), also known as lupus, is a chronic autoimmune disease that entails a lifelong struggle. Despite the estimated 43 cases of lupus per 100,000 people in Malaysia, many people are oblivious of lupus, making it an underdiagnosed disease and a lonely battle for lupus patients and their caretakers. [Ann Rheum Dis 2015;74:1706–1713] To address this issue, the Malaysian SLE Association (PSLEM) and the Malaysian Society of Rheumatology (MSR) have partnered with AstraZeneca to introduce #UnlockingLupus, a public awareness campaign designed to increase lupus awareness and encourage early diagnosis.

The #UnlockingLupus campaign was launched in conjunction with World Lupus Day. It was officiated by Dr Izzuna Mudla Mohamed Ghazali, deputy director, Malaysian Health Technology Assessment Section, Medical Development Division, Ministry of Health. Also present was Dr Heselynn Hussein, president of the Malaysian SLE Association, Associate Professor Dr Syahrul Sazliyana Shaharir, rheumatologist, Hospital Canselor Tuanku Muhriz UKM and MSR representative, and Bernice Chan, chief marketing officer of AstraZeneca. As part of its ongoing endeavours to raise public awareness about lupus, PSLEM also organized the “Walk-a-Payung for Lupus” event in conjunction with World Lupus Day on 10 May. The umbrella walk represents the support and protection required by those with lupus, as well as the impact of lupus on parents and their support system.

Heselynn said: “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.” She added PSLEM offers an SLE fund for which patients may apply. Although there is no cure for lupus, it is manageable with the right treatment and support. Depending on the nature and severity of the symptoms, the available treatments help manage ‘butterfly’ flares while minimizing organ damage.

Syahrul said the goal of the campaign is to assist patients in being heard and supported in their struggle. Living with lupus is difficult as it affects the body and psyche. With the campaign microsite (available at www.unlockinglupusmy.com), everyone can learn more about lupus, whose symptoms are frequently concealed, making diagnosis difficult.

Chan said many lupus patients experience difficulties with diagnosis, unpredictable disease flares, and limited treatment options. Five million individuals worldwide are affected by lupus, which imposes a significant physical, emotional, and monetary burden. “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.” She added that AstraZeneca intends 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,” said Chan.

SLE backgrounder
SLE is an autoimmune disease in which benign body tissue is attacked by the immune system. [Ann Rheum Dis 2015;74:1706–1713] It is a chronic and complex disease with multiple clinical manifestations that can affect multiple organs and produce a variety of symptoms, such as pain, rashes, fatigue, joint swelling, and fevers. [Arthritis Rheum 1999;42:1785–1796] Within 10 years of diagnosis, approximately half of all patients with SLE will have some form of organ injury due to the disease or existing treatments, which exacerbates symptoms and increases the risk of mortality. [Rheumatology (Oxford) 2009;48:673–675]