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MSSI organise event to spread awareness on multiple sclerosis

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The theme this year was ‘Invisible MS’ which addresses invisible symptoms of MS

On World Multiple Sclerosis Day, Multiple Sclerosis Society of India (MSSI) organised an event in Mumbai to spread awareness about the gravity of the condition to encourage support for people suffering from multiple sclerosis (MS). Dr SM Katrak, Consultant Neurologist, Jaslok Hospital and Research Centre, Mumbai, Dr Satish Khadilkar, Dean, Professor and Head, Department of Neurology, Bombay Hospital and Medical Research Centre, Renuka Malakar, National Secretary, MSSI and Sheela Chitnis, Co-Founder, MSSI spoke about the various aspects of MS, challenges in its long-term management and importance of awareness about the condition in India. Patients suffering from MS were also present at the event.

MS is a condition affecting the central nervous system (mainly brain and spinal cord) resulting in nerve damage. This disrupts communication between the brain and the body. It’s a lifelong condition that has the potential to cause serious disability. This year, the theme for MS Day is ‘Invisible MS’ which addresses the invisible symptoms of MS. These could be blurry vision, urinary incontinence, fatigue, dizziness, difficulty in speech, difficulty in walking, inability to process information, etc.

Addressing the symptoms and treatment options Dr Khadilkar said, “Early diagnosis and availability of new drugs and treatment options can help improve the quality of a MS patients’ life. MS is a condition which affects the central nervous system (mainly brain and spinal cord) resulting in nerve damage. MS is more prevalent among youngsters; therefore, the impact is more as they age. But the fact is still that girls are more affected than boys. It affects the functioning of important parts of their body. The symptoms include blurry vision, difficulty in urination and difficulty in balancing. The need of awareness of availability of treatment options and early diagnosis is very important in this modern world.”

Commenting on the condition, Dr Katrak said, “The current prevalence of MS in India can be estimated to be 7-10 per 100,000 people. This data is also incomplete as there are very few studies and there isn’t any information available on the rural population. Increased awareness about the condition amongst neurologists and availability of MRI’s have resulted in more patients being reported over the last few years. The cause of MS can be attributed to two factors – namely genetic and environmental. The onset of MS has been observed amongst the age group of 25-35 years with male:female ratio of 1:2. The rising incidence is an eye opener for India to be more inclusive of the condition and its disabilities.”

The 40 per cent criteria for benchmark disability should not be applied for MS patients. Owing to the unpredictable symptoms, the degree of disability can get worse for a patient within days. We have started speaking to multiple stakeholders to advocate rights of people with MS” said Malakar.

Commenting on the same, Chitnis said, “The life of an MS patient is full of obstacles not knowing what the next episode has in store. They face discrimination at work, family and social level due to their invisible symptoms. We provide counselling to these patients to tackle this social stigma. Despite the recognition in the Disability Act, patients face difficulty in getting their condition considered correctly due to the invisible symptoms. In MS, the degree of disability isn’t the only measure for consideration as the patients face unpredictable symptoms. We would like to urge the disability commission to understand the ordeal of these patients and provide them with a disability parameter of over 60 per cent. We are also working towards raising awareness to make every vicinity more disable friendly.”

The event was also a platform for the patients to discuss their individual challenges and journey. With the advent of technology, MS patients have a support group online as well, ‘World v/s MS’ where they can draw inspiration from each other’s struggles and positive stories.

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