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Thursday, 1 May 2014

Living with multiple sclerosis

‘PMSM appeals for support to ensure all patients get full funding for treatment,’ says multiple sclerosis advocate Padma Panikker.

‘PMSM appeals for support to ensure all patients get full funding for treatment,’ says multiple sclerosis advocate Padma Panikker.

Early intervention and treatment can greatly improve the lives of MS patients.

MULTIPLE sclerosis (MS) is a disease in which the covering of the nerves are gradually destroyed, impairing a person’s speech, sight and ability to move. It affects people between the ages of 20 and 40, and is more common in women than men.

Though MS is rare in Malaysia and Asia, it ranks among one of the leading causes of disability in young people.

Padma Panikker was diagnosed with MS during her late twenties. Today at 67, she is one of the leading advocates for persons living with MS in the country. Padma and her hubby are co-owners of a business set-up. She also spends a lot of time with the Multiple Sclerosis Society of Malaysia (PMSM). Padma has served the society as its president for nearly a decade. Last month, she took over as secretary.

“I’ve had MS for so long now that I’ve learnt to accept it as part and parcel of my life,” says Padma. “However, the struggle with MS is oftentimes so personal that it is not surprising to come across family and friends who do not fully appreciate the difficulties one has to go through each day.”

There are several subtypes of the disease. One form is Relapsing Remitting Multiple Sclerosis (RRMS). These are moments when the symptoms of MS come on and off, but a person is never completely rid of it during the remitting period.

And a patient with MS may have new symptoms which he has never experienced before. This depends on which particular nerve is affected.

Then there is the secondary stage when symptoms increase and do not go away after some time like before. The common symptoms of people with MS are blurring of vision, double vision, numbness and weakness of hands and legs.

Others include speech difficulty, bowel and bladder problems, difficulty in remembering things and unsteadiness in walking.

When an individual with MS has an attack, the symptoms could last for weeks or months. And they can happen again at a different time.

Padma points out that it is essential for persons with MS to see a doctor early for diagnosis and treatment. Repeated attacks could lead to disbility and subsequent loss of income.

A diminished quality of life together with various social issues can further burden an individual and his family.

“One example is that of a young woman in her early 20s who was forced to quit her studies when she ended up in a wheelchair. She gradually lost her sight and had to use a catheter due to incontinence,” says Padma. “The problem becomes tragic when the patient’s husband deserts the family at a time when they are most needed.”

Although there is no cure for MS, symptoms can be managed with early diagnosis and treatment.

Following an acute attack, steroids are administered to reduce the severity of symptoms. The rate of recovery varies from individual to individual.

Long-term treatment is aimed at reducing the frequency of attacks to invariably reduce disability. The cost of treatment can range from RM3,500 to RM10,000 a month, which is beyond the means of the average Malaysian. Employers may not be able to cover these expenses, too. Insurance companies may find it difficult to cover the medical bills long-term and this may result in interruption of treatment.

Currently, most patients with MS get their supply of medication from government hospitals. However, in view of the cost, not all patients will have drugs available to them.

“The social welfare department has been helping some patients in government hospitals,” says Padma. “They may withhold support for these patients soon. PMSM appeals for support from the Government and various agencies to ensure all patients get full funding for treatment.”

World Multiple Sclerosis Day is celebrated on the last Wednesday of May every year. This year it falls on May 28. There will be a public awareness walk on June 1.

> For more information, please call Multiple Sclerosis Society of Malaysia (03-7874 6601).

Tags / Keywords: Opinion , Lifestyle , anthony thanasayan

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