17th Annual Conference Pakistan Society of Neurology 15-16 May, 2010
 
 
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Pakistan Journal of Neurological Sciences
Affiliated with Multiple Sclerosis International Federation
©2009 Multiple Sclerosis
Research & Patient Welfare Trust
My Life with MS
MS is a serious, life-long and disabling disease of the central nervous system (CNS), which consists of the brain, spinal cord and optic (eye) nerves. The disease often strikes people in the prime of their lives, when they are in the middle of building their careers and families. In fact, research shows that it is the most common neurological disease affecting young adults, with a mean age of between 29 to 33 years old. Women are also more susceptible to the disease than men As MS affects adults at the prime of their lives, it is a healthcare burden in Pakistan, affecting workforce productivity and reducing the pool of potential talent.

An under-diagnosed disease in Asia
MS is not a familiar disease to many in Asia.  Its prevalence has been estimated at between one to nine patients in 100,000. Although trends have identified that Caucasians are more than twice as likely to suffer from MS as other races, in some parts of Asia, MS is increasing.

In Pakistan, prevalence of MS is assumed to be one to three in 100,000.  However, local experts believe that there are more MS sufferers in Pakistan.

The low figures seen in Pakistan and Asia could also be attributed to under-diagnosis due to the lack of awareness of MS, the difficultly in diagnosis, and a lack of access to magnetic resonance imaging (MRI, a non-invasive form of imaging that produces detailed pictures of the brain) and/or neurologists, who are specialists treating the disease.

 

Symptoms

Symptoms are unpredictable and may vary from person to person.  They include:

  • fatigue or tiredness,
  • dimness of vision
  • weakness of legs,
  • spasticity (stiffness)
  • loss of bladder control,
  • slurred speech
  • double vision
  • Challenges in Multiple Sclerosis
    The exact cause of MS is unknown. Research suggests that a combination of genetic and environmental factors is involved11.  It is thought to be an autoimmune disorder, meaning an individual’s own immune system attacks their healthy cells and tissue9. When this occurs, myelin, the protective insulation surrounding nerve fibers of the CNS, is destroyed and replaced by scars.  Ultimately this damage interferes with nerve communication between the brain, spinal cord and optic nerves, leading to symptoms.  

    If left untreated, MS may progress and patients may develop severe and irreversible disabilities.  This causes them to become totally paralyzed, wheelchair-bound and even blind.
    However, with early diagnosis and proper management, patients can enjoy significantly improved quality of life.  Recent advances in medicine have also helped to break new grounds in the treatment of MS. Studies have shown that patients staying on treatment with beta interferon-1b (Betaferon), patients significantly improve symptoms (decreasing the frequency and severity of relapses) and slow disease progression.

    Efforts done to raise hopes “My Life with MS” in Pakistan
    MS is a debilitating disease can lead the patients to loose hopes and disrupts the quality of life and they may become burden on society. Many people with MS continue to live a normal life and can go for long periods of time without developing any symptoms.

    After initial diagnosis and during the first months of therapy, MS patients have many questions in their mind, not only with regard to the disease and its impact on their future life, but also with regard to day-to-day therapy aspects. To improve the moral and to discuss day to day problems which MS patients may come across in their daily lives a forum was formed under the name “My Life with MS”.
    The forum is a miles stone in Pakistan that its first meeting was held in November 24, 2007 at Marriot Hotel, Karachi. Patients suffering from MS and eminent Neurologists attended this forum. Patients discussed there problems among each other and with physicians. Motivational remarks and speeches were made by patients on therapy with a message that Life with MS can be made enjoyable.
    This forum is appreciated by all the attendees.