The All India Institute of Medical Sciences (AIIMS) will be mobilizing efforts towards creation of India specific data at the national level to solve multiple sclerosis (MS) and related diseases problems and provide better lives for those who are suffering from the debilitating disease.
In this regard, the AIIMS is keen to set up of a National MS Registry for maintenance of epidemiological data of MS patients from across the country for evidence based research, treatment, and education, said a release here.
Since 2011, the Department of Neurology has also begun collecting data of MS patients undergoing counselling and treatment at AIIMS, their demographic profile, medical condition, quality of life, disability stage and post treatment outcomes.
Dr Rohit Bhatia, additional professor of Neurology, AIIMS, said, “The neurology centre at AIIMS has today is seeing more MS patients residing in tier I and tier II cities from across the country. Therefore efforts are being made to collate the data and understand the disease from an Indian perspective, which as of now, is not the case as the disease is considered more predominant in the western countries.”
On its part, MSSI, the only patient support group on MS India, has taken an initiative to obtain statistics of the occurrence of MS in India. “A three year national MSSI 'REACHING OUT' pilot project has been initiated since February 2012 across cities in Uttar Pradesh to gather more data on MS patients. The final structured project will be implemented in all other states of India in the coming years,” Bipasha Gupta, national secretary, Multiple Sclerosis Society of India.
Doctors are confident that patients of MS can live longer and healthier if the disease is timely diagnosed and effectively managed. According to Dr M V Padma, Professor, Department of Neurology, AIIMS, “The availability of more diagnostic centres with MRI facility is proving to be a boon for multiple sclerosis (MS) patients for whom the disease can otherwise be extremely difficult to be diagnosed. Early diagnosis and treatment can slow disease progression and minimize associated disability, particularly because the condition can cause irreversible damage.”
MS is an auto-immune disease in which the body attacks its own cells and tissues. Due to damage in the nerve layer, transmission of signals from the brain and spinal cords gets affected. The most common symptoms are numbness, weakness in the limbs, sudden loss of balance, blurred vision and paralysis. Genetic and environmental factors are known to contribute to MS, but a specific cause for the disease hasn’t been yet identified. It affects primarily seen among youth who are in the 20-40 age bracket.
As per Meenakshi Bhujwala, secretary, MSSI Delhi Chapter, “Being diagnosed with multiple sclerosis, as with any chronic illness, is difficult. However more difficult is to deal with the emotional and psychological effects. We need more number of neurologists and volunteers in the country to deal with the complex problem called MS which has till date no cure but can only be managed.”
According to global study conducted by the World Health Organization (WHO) and Multiple Sclerosis International Federation between 2005- 2007, there may be 50,000 MS patients in the country. Given that India does not record data the actual number is believed to be much higher. Women are twice more likely to fall prey to MS than men. Although there is no cure, certain disease modifying medications and monoclonal antibodies can reduce recurrent attacks and prevent disability.