Life can be very challenging for SLE patients whose plight remains largely unnoticed by society.
THE wheelchair logo is commonly accepted as the symbol of people with disabilities the world over. However, the fact is, not all disabled people use wheelchairs. And for quite a few who do, they end up using them only much later in their lives.
But there are Malaysians in our midst with even greater handicaps, and they remain largely invisible to the rest of society. Many of them are perfectly capable of walking, yet they stay trapped within their homes because of the lack of support from society.
I am referring to people with a condition called Systemic Lupus Erythematosus, a chronic auto-immune disease that can affect any organ system in the body. The patient’s body makes large quantities of antibodies which attack the tissues.
Symptoms range from persistent joint pains, swelling and rashes to mouth ulcers, anaemia and skin rashes.
Although there is no cure for SLE, it is thankfully treatable. New drugs are being introduced which can control the disease by reducing the symptoms, reversing inflammation and cutting down on organ impairment.
Despite the difficulties that people with SLE have to put up with, they and the people who support them are fighting back against the disease in more ways than one.
Last week, the Malaysian SLE Association which is based in Petaling Jaya, held a charity walk in the city. It saw the participation of more than 1,000 people who included SLE patients and their supporters. The fundraiser was to assist poorer patients to pay for their treatment and surgery.
Environmental group Friends of Kota Damansara (FoKD) chairman Jeffrey Phang, 58, and his group were among the volunteers at the charity event.
“When we were first invited to participate, most of us hadn’t a clue what SLE is,” said Phang.
“SLE is an invisible handicap. People living with SLE look perfectly normal even though they have a potentially fatal and disabling disease. There were no wheelchairs, walking sticks or white canes – a common sight in events involving the disabled – that Sunday,” said Phang.
However, Phang noted a unique feature that morning.
“Because many SLE patients are unable to come into direct contact with sunlight, they have to use umbrellas and cover up their body as much as possible whenever they go out. Armed with their brollies, the advocates for SLE proudly proceeded with their march for greater awareness. It was wonderful to see people coming out by the dozen, and sacrificing their Sunday to lend support to the SLE community,” said Phang.
The organisers made sure that everyone – even those without SLE – had an umbrella for the walk.
The occasion was flagged off by Kota Damansara assemblyman Dr Mohd Nasir Hashim.
“It was glorious to see a sea of people in red T-shirts pouring out on to the road and getting the notice of everyone. There were the young and the old, and people from all walks of life – all feeling a part of a much-forgotten community. It was an excellent example of the non-disabled showing their solidarity and support for people with disabilities. It became poignantly clear to us that if we simply ignore such a community, we can make it a very lonely battle for them,” said Phang.
Phang said that through the personal stories of SLE patients, he learnt how complicated and challenging life can be for them. SLE often mimics the symptoms of other diseases, and is easily mistaken for other illnesses. Its symptoms vary widely, and come and go unpredictably.
Diagnosis can thus be elusive, with some people suffering unexplained symptoms of untreated SLE for years.