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Understanding multiple sclerosis

 | May 28, 2014

This Sunday some 300 Malaysians are expected to turn up for a special gathering called MS Walk 2014 to show their support for people with MS.

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Anthony-SB ThanasayanToday is World Multiple Sclerosis Day. It was started by the UK-based Multiple Sclerosis International Federation in the year 2010.

Since its inception, organisations to support persons with multiple sclerosis or MS the world over, have been using the occasion to bring greater awareness for people with the disease and their caregivers.

Malaysia is no exception.

This Sunday (June 1, 2014) around 300 Malaysians are expected to turn up for a special gathering called “MS Walk 2014” to show their support for people with MS. It will be held on the grounds of Sunway University in Bandar Sunway, Selangor.

The three-hour event which is open to the public is free to all. It begins at 7am.

In addition to the three kilometre awareness walk which is the main highlight, participants will also be treated to other activities.

These include the very popular Zumba fitness exercise sessions where everyone can participate to listening to informative and inspirational talks by some top local experts on psychology and positive living.

There will also be plenty of opportunities, of course, to mingle with people with MS and their caregivers in what promises to be a delightful family affair morning.

Breakfast will be served. There will also be free T-shirts and goodie bags to go!

MS Walk 2014 is organised by the Petaling Jaya-based MS Society of Malaysia and supported by the Rotary Club of Bandar Sunway.

“Since we were formed in 2003, I’m happy to say that Malaysians are slowly becoming more aware about MS than they were before,” says Padma Panikker, secretary of MS Malaysia.

“This has resulted in more people with the condition being correctly diagnosed leading to better treatment and support for them,” she adds.

There is currently no cure for MS. It remains as a complex and unpredictable disease.

Unfortunately, there is no laboratory test, symptom, or physical finding which, when present or positive, always means a person has MS.

In addition, some of the symptoms of MS could also be caused by other diseases.

“If anyone is concerned that they may have MS symptoms, they should see their GP. He or she may then refer them to a neurologist if they believe further tests are necessary,” Padma points out and adds, “One can seek support from health professionals before, during and after a diagnosis.”

The best strategy

MS is a disease in which the covering of the nerves gradually becomes destroyed, damaging a person’s speech and sight and ability to move.

Its diagnosis can be extremely difficult to come to grips with. All of a sudden there is a lot of new information to absorb, questions to be asked and key decisions that need to be made for people with MS, their caregivers and loved ones.

And most people diagnosed with MS are those in their early adult years, when they are establishing a career, studying, or starting a family.

Padma says she has had MS for almost four decades so much so that she can’t recall what life was like without it.

“It was only in 1974 when I was finally diagnosed with MS. Before that I was given all sorts of labels like “Psychiatric Case” by some doctors whilst some friends thought I was just being difficult in order to get my husband’s attention.”

“But it was finally after my persistent problems of numbness, pain and loss of vision in my right eye, when a doctor put a name to my condition,” Padma says with a sigh of relief.

However, back then, all Padma got was blank looks because very few people knew about MS or support groups.

Finally she found one: the MS Society in the UK which eventually led her to join forces to form the current Malaysian chapter.

The society grew stronger through tea gatherings in members’ houses to what it is today with two prominent consultant neurologists from Hospital Kuala Lumpur as the society’s advisers.

“Since there is no cure for MS, the best strategy is for long term treatment to cut down the frequency of attacks and to reduce disability.

“A major problem is the cost of medicine which can range from RM3,500 to RM10,000 a month.”

Padma says the saddest part is those that often need help are those in their 20’s who not only are unable to afford such medication but also have their dreams of building a career and family in life forever crushed.

“I know a young girl in her early 20s who is almost blind and totally dependent on others for help because of MS.

“Another individual, also a young lady goes through constant fatigue and depression. Both of these women were on subsidised medication until it was suddenly stopped.”

Padma points out that they are no longer on the medication which they need simply because they are unable to afford it.

Expensive

IMG-20140525-WA0001“People with MS badly need subsidised medication so that they can lead a full and normal life. By getting such aid, they will be able to get back to work and be able to contribute back to society.

“Love is our true essence. This love does not distinguish between race, colour, religion or nationality, we are all like beads strung on a thread of love.

“This year’s theme for World MS Day is ‘Access’.

“As such, our wish is for every MS person in Malaysia to have access to government subsidised medication,” concludes Padma.

Happy World MS Day to all!

(For more information on MS and MS Walk 2014, please call: 03 7874 6601.

Anthony SB Thanasayan is a wheelchair and animal activist. He is also a former city councillor.


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