When we think of most dangerous diseases, seldom we come across anyone talking about Multiple Sclerosis. In fact, it is not commonly heard too. Just to draw a comparison in terms of awareness of a lay man, Cancer is presumed to be the mother of all diseases due to its complexity and non-curability but that’s changing too. We often read about the increasing possibilities of saving a cancer patient in its early stages. MS may not be as physiologically depleting as Cancer but its complexity is no less.
Surprisingly, there aren’t even enough studies on Multiple Sclerosis and it is a non-curable disability.
What Is Multiple Sclerosis (MS)
Multiple Sclerosis (MS) is an autoimmune disease in which body’s immune system starts damaging the protective layer of the nerve cells in the brain and the spinal cord.
It is a disease of the Central Nervous System affecting its functioning unexpectedly and repeatedly resulting in devastating disabilities in young people in the prime of their lives.
MS has various symptoms ranging from extreme fatigue, visual disturbance to total paralysis. It becomes impossible for the sufferer to perform simple everyday tasks.
MS In India
Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. In India, MS is targeting children as well, starting from the age of 16 years.
As per the last study conducted in India in 2003-04, there were 200,000 reported patients affected with MS. Post that no study was conducted/done on this and it is believed that this figure must have gone up by 2 to 4 folds which could be 10 percent of world’s total Multiple Sclerosis patients.
In India, there’s an oldest society dedicated to help people affected by multiple sclerosis effectively manage and cope with the disease, called – Multiple Sclerosis Society of India (MSSI) and it’s working to build awareness amongst all important stakeholders to be able to create the first MS registry, a base for research and access to affordable treatment.
MSSI commemorated ‘World Multiple Sclerosis Day’ in the Capital and brought experts in the field, government officials and MS patients on a single platform to spread awareness about MS and work substantially towards helping and supporting those affected by it.
“There is a dire need of representation of disable people at the government level so that more disabilities can be included in the disability act and more schemes can be introduced &benefits can be passed on to the disable people. Government is planning to introduce a centralize data management system which would help in keeping a track on the population of disable people, type of disability and work effectively to provide facilities to the beneficiaries and the authorities will be able to access this centralize data from anywhere”, K. Vikram Simha Rao, Director, Department of Empowerment of Persons with Disabilities, Ministry of Social Justice and Empowerment, Government of India, informed.
“Department of Empowerment of Persons with Disabilities has extended its proposal of including Multiple Sclerosis along with 20 other disabilities in the Ayushman Bharat – a National Health Protection Scheme (NHPS) so that MS patient can avail the central government’s health scheme, this would help a MS patient to be self-reliant to an extent”, he added.
Kameshwar Prasad, Head of the Department of Neurology, AIIMS was also present on the occasion and said, “A lot of research needs to be done on MS, earlier when MRI was not there it was hard to detect MS and used to be considered as the rare disease but post MRI it helps the doctor to diagnose the MS patient more effectively. MS patient and his family needs to be psychologically strong because MS also affects the patient’s mind, will-power, employment and it disturbs his family and friends as well. It’s high time that organizations like MSSI, private institutions and government should come together to research so that the preventive measure can be taken and collaboratively work towards providing affordable MS generic drugs to the patient.”
T.D. Dhariyal, Commissioner for Persons with Disabilities, Govt. of NCT of Delhi, shared that one of the major issues faced by MS patients or differently-abled people is that of accessibility in a routine Indian life.
“In these years we have noticed that the most common problem that a disable person faces is the ease of accessibility. A lot of awareness need to be created for MS and the organizations like MSSI should come forward and lead the awareness creating campaign. We are dedicated towards making Delhi the most accessible city, whether its related to providing facilities to the MS patients, giving employment, care and the allowance as well. In some cases, we have taken suo motu action and made sure that disables are treated equally, and their rights are rightly served”, he stated.
More About MSSI
The Multiple Sclerosis Society of India (MSSI) is a registered voluntary, non-profit organization established in 1985 that works for the welfare of people affected by Multiple Sclerosis. It is affiliated to MSIF UK (Multiple Sclerosis International Federation). Through its state chapters in Delhi, Mumbai, Kolkata, Bengaluru, Chennai, Indore, Pune and Hyderabad MSSI provide Counseling, Physio and Occupational therapy & Home Nursing Care, Scholarship, Free Medical Camps & connecting them to information and resources required to manage the disease and live life in the best way possible, to improve the quality of life and resources so that everyone affected by multiple sclerosis can live life the best they can.