The disease is now impacting youngsters too unlike before when it only used to impact people over 52 years of age.
Motor Neuron Diseases (MND) cases are increasing at a significant level in India. However, India does not register cases leading to a lack of data in the country, doctors say. This, they added hampers any effort to impact policy.
According to a study done in 2019 by the Lancet Global Health, disability-adjusted life years (DALYs) for neurological disorders have increased in all states of India making India a part of the Global burden of diseases and injuries risk factor.
The study also shows that the contribution of non-communicable motor neuron diseases in India has increased from 4.0 percent in the 1990s to 8.2 percent in 2019.
Dr. Vasant Rao Founder of Dr. Shyama Narang Foundation which runs a motor neuron disease trust that works with the National Institute of Mental Health and Neurosciences (NIMHANS) said that motor neuron diseases are constantly increasing and now even younger generation is also getting affected by such diseases.
Dr Rao explained, “We see youngsters who work as fitness trainers or in the Information Technology (IT) sector developing MND,” the problem is that the Government of India does not register the number of cases, therefore India lacks statistics as well as proper medical services for MND patients. “We are pushing the Government to maintain data for MND in India and to provide funds for people suffering from MND,” added Dr Rao.
Dr. Neha, a senior resident in NIMHANS said that the disease requires a rather long treatment and that is very expensive, and not everyone in India can afford it.
She gave an analogy of the COVID-19 pandemic that at the time of the pandemic government knew that vaccine was the only key, therefore government funded the cause, and pharmaceutical companies were also sure about their returns, but in the case of MNDs, our country is far behind the world as despite its increase and costly treatment government is taking no action in networking clinicians with researchers and researchers with other companies who are funding the research.
Krishan, father of a 16-year-old boy said, “All I can say is that, It was the darkest day of my life when I found out that my son was suffering from MND, he used to play nice football but slowly his leg muscles started becoming sore.”
Mr Venkatesh said that his father who is 62 years old was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in 2022. He said, “My father first got weakness in muscles, we thought it was age-related but when the symptoms increased and we got tests done, we found out what we could never have expected that he is suffering from ALS.”
He has not been the same since then. Currently, he is on regular checkups and three physiotherapy sessions a week which overall costs a lot, added Mr. Venkatesh.
The cause of MNDs remains mostly unknown as Dr. Bhargavi of BRAINS Super Speciality Hospital said, “MND is a very tricky disease, it is hard to categorize it, sometimes the causes can be genetic, environmental and most of the times unknown.”
She added that once it occurs then it will impact the patient for the lifetime and not everyone can afford the treatment.
Dr. Priyanshu, a medical expert explained that motor neuron diseases are basically progressive in nature. The most common of all at present times is ALS. Clinical features of this disease include muscle weakness, muscle twitching etc. The most common cause is genetic mutation therefore MND is difficult to treat.
He added, “We suggest affected patient to go through genetic testing to get to the cause of the disease, but for many patients it is a very expensive procedure, It would really help if government intervenes in this by not just registering the cases but also to provide separate funds for affected patients.”