2. Multiple Sclerosis The Malaysian Saga Dr Rahul Chavan, MD Medical Director, Malaysia

3. Outline Introduction 1 2 Prevalence Etiology of MS 3 4 Types of MS Progress of Disease 5 6 Symptoms of the Disease Disability and its Implications 7 8 Status update

4. Introduction: Multiple sclerosis (MS) Chronic autoimmune disorder affecting movement, sensation, and bodily functions. Destruction of the myelin insulation covering nerve fibers (neurons) in the central nervous system. Symptoms associated with permanent or transient nerve conduction defect

5. What is Multiple Sclerosis? It is an Auto Immune Disease, where the body starts to attack and destroy itself. It is a life-long disease with no cure. The disease affects those in the early to late twenties, affecting the most productive years of their life. The disease is twice as common in women than in men. MS affects the Brain and the Spinal Cord (central nervous system) causing inflammation and ultimately leading to damage. If damage is severe it can also destroy the nerve/axon itself.

6. Background As damage accumulates, symptoms become more permanent and progressive disability ensues. As disability accumulates, the patient becomes progressively dependent on helpers, wheel chair bound and ultimately bed ridden. MS is a disease characterised by wide variations between patients and for the individual over time, thus making categorisation difficult. Currently in Malaysia about 700-800 people have been diagnosed with MS, but there are many more….

7. Our Evolving Understanding MS was considered a rare disease in Asia with the prevalence rate of only 1.33/1,00,000. WHO Multiple Sclerosis Atlas of 2008 describes the prevalence rate of 2.8/1,00,000 in the South East Asian region. Currently prevalence is considered to be between 5 to 7 / 1,00,000. (might be higher).

8. What Causes MS? “Despite extensive research, we still don’t know what causes MS” (O'Connor). However they have found associations and links between many factors including genetic and environmental. Genetic Environmental Sex Latitude Racial GroupFamily history MigrationInfections

9. Various types of MS and their frequency time Intensity and progression time Intensity and progression time Intensity and progression time Intensity and progression Benign MSRelapsing–remitting MS Secondary progressive MS Primary progressive MS 15 % 45 % 30 %10 %

10. Progression of Disease Number of lesions RRMS SPMS Pre-clinical Continuing Nerve damage Disability Relapse

11. Most Common symptoms of MS Symptoms are variable and depend upon the location of the damage within the brain

12. 10 Year Disease Progression, if untreated! Patients progressing to SPMS (%) 1 Kappos L, et al. Neurology 2006;67(6):944–953; 2 Weinshenker BG, et al. Brain 1989;112(Pt 1):133–46; *An incidence cohort, 10 years after the onset of disease. 2 † A cross-sectional cohort of patients 11–15 years after onset of RRMS. 3 50% 58% 70 60 50 40 30 20 10 0 Natural history dataset 1* Natural history dataset 2 †

13. The Disability 15 years after disease onset 15% of MS patients need technical aids for walking and 29% use a wheelchair- Physical & functional impairment. During the first 10 years after diagnosis 50–80% are out of work- Socioeconomic & psychosocial impairment. Normal No disability, few signs Minimal disability Mild disability Needs assistance to walk Wheelchair, some steps Reduced Mobility Bedbound Wheelchair, no steps Death

14. Is disability inevitable? As mentioned, there are numerous different paths that MS can take. Although MS as a disease is much feared, the prognosis in general is not as poor as commonly thought”. 5-20% of all patients will develop benign MS, and another 33% will have little to no disabilities allowing them to live independently while not in relapse. 33% of MS patients will have a severe disability.

15. The Situation so far MS treatment was funded by Medical Social Welfare Funding till January 2014 This support has been withdrawn There were 30 patients without any treatment Of the total patients, we have managed to secure funding for 12 patients However there are still many patients without any access to therapy We would like to work with Rotary Club Johor to come up with a way to provide these patients access to treatment

16. Our Commitment

17. Public Forum MS Walk MS Society Malaysia

18. MS Awareness Treasure Hunt Objective: Increase MS awareness among public and bonding session for MS patients and care giver. Patient Gathering Objective: reach out patient in East M’sia to show support that they are not alone.

19. Thank You