WEEKEND VIEW FROM WHEEL POWER:
SAY the word “disabled” and everyone immediately thinks wheelchairs.
True, the wheelchair logo is commonly accepted as the symbol for 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.
Did you know that there are Malaysians with sometimes even greater handicaps in our midst who remain invisible to our eyes?
Many of them are perfectly able to walk; but frequently stay trapped within their homes, because of the lack of support from society.
Welcome, folks, to the world of SLE or people with a condition called Systemic Lupus Erythematosus.
It’s a mouthful to mean a chronic inflammatory disease that can affect any organ system in the body.
In simple terms, it’s an abnormal immune response from your body making you your own worst enemy.
There are a variety of symptoms that range from persistent joint pains, swelling and rashes. Others include mouth ulcers, anaemia and skin breaks when directly exposed to the sun.
Despite the fact that there is no cure for SLE, it is thankfully treatable. And, sooner the better!
New and newer drugs are being introduced that 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 go through, they and people who support them are fighting back against their disease in more ways than one.
Last week, the Malaysian SLE Association based in Petaling Jaya held a charity walk in the city. It brought along more than 1000 people – both persons with the disease and the public – to their aid in a local private hospital.
The fundraiser was to assist poorer patients with SLE to pay for their treatment and surgery which they can ill afford.
Environmental group Friends of Kota Damansara (FoKD) head Jeffrey Phang, 58, and his group were among the raring-to-go volunteer crowds on Sunday, a fortnight ago.
“It was a lazy morning and most of us had to forego our ‘sleep-in’ and be there by eight o’clock sharp,” Phang who has been involved with FoKD for nearly a decade, explained.
“When we were first invited to participate, most of us hadn’t a clue as to what SLE was,” he added.
“Nobody were in wheelchairs, using walking sticks or white canes as is a common sight in other events with disabled people.
“SLE was an invisible handicap. They looked perfectly normal even though they were carrying a potentially fatal and disabling disease that attacks them physically and emotionally.”
However, Jeffrey says there was a very unique feature about that morning.
“Because many SLE people are unable to come into contact with direct sunlight, they have to use umbrellas and cover their bodies up as much as possible when they go out,” he explained.
The organisers made sure that everyone – even those without SLE - had umbrellas with them to join in with the walk.
“Armed with their brollies and water bottles each the army of advocates for SLE, proudly proceeded with their march for greater awareness for their struggles from the car park.”
The occasion was flagged off by the Kota Damansara state assemblyman, Dr Mohd Nasir Hashim.
“It was a glorious moment to see a sea of people in red T-shirts pouring into the roads and getting the notice of everyone.
“I could see people from all walks of life there. Professionals to ordinary clerks, the old and the young to some noisy teenagers – all feeling a part for a much-forgotten community of Malaysians,” said Jeffrey.
“This was an excellent example of the non disabled showing their solidarity and caring with people and their differences,” observed Jeffrey who is assistant professor of University Tunku Abdul Rahman in Cheras, Selangor.
“It became poignantly clear to us that apart from SLE itself, how we as able-bodied decide to treat or simply ignore such a community can make it a very lonely handicap indeed for them.”
Jeffrey said that through their personal stories he learnt how complicated – and at the same time, challenging - life can be for SLE persons.
SLE often mimics the symptoms of other diseases, making it easy to be 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.
However, back to that power-charged morning, Jeffrey says it was wonderful to see non affected people coming out by the dozens and sacrificing their Sunday to lend support to the SLE community.
“For me and my friends from FoKD, there is no other way forward than this in helping to create a true and meaningful caring society,” concluded Jeffrey.
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