JOIN USAll India Institute of Medical Sciences is all set to mobilise efforts to create a centralised data at national level to assess multiple sclerosis (MS) and related diseases.
Since 2011, department of Neurology, AIIMS, has been collecting data of MS patients undergoing counselling and treatment at the hospital.
The data is collected on the patient’s demographic profile, medical condition, quality of life, disability stage and post treatment outcome.
Experts are keen on a national MS registry for maintenance of epidemiological data of such patients from across the country for evidence based research, treatment, and education.
MS is an auto-immune disorder in which a body attacks its own immune system. Due to damage in the nerve layer, transmission of signals from the brain and spinal cords gets affected. 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 has not been identified yet.
Its affects are primarily seen among youth in the age bracket of 20 to 40 years.
Ahead of the world MS day, observed in 78 countries, experts emphasised on the need to make the treatment cheaper and accessible.
“The cost of the treatment is Rs 20,000 to 30,000 per month and the treatment goes on for many years. The drugs should become cheaper. Efforts are on for indigenous production of drugs,” said Dr Rohit Bhatia, additional professor of Neurology, AIIMS.
Meenakshi Bhujwala, secretary, multiple sclerosis society of India, Delhi chapter said, “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 to deal with MS, which has till date no cure, added Bhujwala. The experts warned of certain treatments being suggested by doctors — especially in private hospitals. “Chronic cerebrospinal venous insufficiency is not an approved treatment. Its efficacy and potential to treat MS still has to be proved,” said Dr Bhatia.
Any patient who agrees to go through the process should be provided this treatment free of cost, which does not happen, added Dr Bhatia.