Persatuan SLE Malaysia (PSLEM) successfully raised public awareness of Systemic Lupus Erythematosus (SLE) when folks having their Sunday morning teh tarik were caught by surprise by the sight of more than 1,000 walkers with opened umbrellas weaving their way through the roads of Dataran Sunway in Kota Damansara, Petaling Jaya, today.
PSLEM’s Walk-a-Payung event, its fifth since 2007, was flagged off by State Assemblyman for Kota Damansara Dr Nasir Hashim at Tropicana Medical Centre and saw Lupus patients, their family members and friends, and the Kota Damansara community commemorating World Lupus Day this year by coming together to raise funds for needy patients who require joint replacement and cataract operations. Osteoporosis and cataracts are among the major side-effects resulting from the long term use of steroid medications to manage Lupus.
Besides the 3.7 km walk with umbrellas, there was a charity food and fun fair by SLE patients and their friends, lucky draws, a fun quiz on SLE, free checks for blood sugar, blood pressure, cataracts, and hearing disabilities; and a counseling booth manned by PSLEM’s para-counsellors.
Systemic Lupus Erythematosus (SLE), commonly known as Lupus, is a chronic, autoimmune disorder in which the patient’s body produces antibodies that may attack the patient’s skin, joints, kidneys, brain, and other organs. About 90% of SLE patients are women, the majority aged between 15 to 50 years of age, while men and children make up the remaining 10%.
Although more than 10,000 people have been diagnosed with SLE in Malaysia, the disease is still relatively unknown to the man-in-the-street. Besides this lack of public awareness, the disease is not easy to diagnose; this could take months, or even years depending on which organs are affected.
Due to this lack of public awareness, Lupus patients tend to feel alone and isolated in their suffering and are often in need of social and psychological support. This need was the main reason for a small group of patients and doctors coming together in 1994 to form PSLEM. Today, the association has grown in numbers to more than 2,600 members with chapters in Sandakan, Penang, Kuching and Johor.
PSLEM President Assoc Prof Dr. Esha Das Gupta said that in 2007, the first Walk-a-Payung event raised funds to start off PSLEM’s free counseling services in major public hospitals where SLE patients receive treatment. In 2008, the event raised money to launch off PSLEM’s SLE Fund, which provides financial assistance to needy patients who require joint replacement or cataract operations. In the following year, PSLEM held its Walk-a-Payung event in Kuching, Sarawak to initiate a new patient support group there.
Next Sunday, May 27, PSLEM’s Johor Chapter will also be holding its own Walk-a-Payung event at Columbia Asia Hospital in Nusa Jaya, Johor to bring together patients and their family members. Those interested to join can contact Addaline at hp: 012-762 8002 to register for the walk.
“People suffering from Lupus face potential strokes, heart attacks, disabling pain and fatigue, disfiguring skin rashes, and other serious health problems associated with the disease. The sad part is that Lupus targets people in the most productive years of their life, people who should otherwise be healthy.” Dr. Esha added.
Members of the public or corporations who would like to support the association can contact PSLEM’s Executive Secretary Ms Cecilia Wong at 03-79577672, e-mail: email@example.com or firstname.lastname@example.org or visit the association’s website at www.lupusmalaysia.org.