The degree of disability should not be the only consideration in multiple sclerosis as patients face unpredictable symptoms, experts said on Wednesday, calling for a deeper understanding of the condition.
The issue was discussed at an event by Multiple Sclerosis Society of India (MSSI) on the occasion of World Multiple Sclerosis Day, observed on May 30 each year. MS is a disease of the central nervous system wherein the protective covering (myelin sheath) around nerves is damaged, resulting in neurological defects.
The prevalence of the disease in India is estimated to be 7-10 cases per 1,00,000 people and that hospital-based studies show that the incidence of the disease has increased from 1.58 % to 2.54% over the last decade, said neurologist Dr. S. M. Katrak from Jaslok Hospital, during a panel discussion on the subject.
Dr. Katrak said though the cause of MS is unknown, there are largely two theories associated with the disease. “According to one theory, sclerosis can be genetic while the other theory states that the disease is caused by environmental factors. It’s a myth that sclerosis is prevalent only in western countries owing to their cold climate. The disease is very much prevalent in our country but due to lack of records and awareness, it is believed to be rare,” he said.
Symptoms of the disease can vary, ranging from tingling sensation, numbness, slurred speech, unusual fatigue, poor coordination, muscle cramps, to blurred or double vision and even paralysis, said Sheela Chitnis, co-founder of MSSI. “The symptoms can also occur in combination and can be seen in varying degrees. In several cases, they can be subtle, making it difficult to diagnose. However, with the advent of magnetic resonance imaging, accurate diagnosis of the disease has become possible,” she said.
Though the disease cannot be cured, it can be treated with the help of the right medication and symptoms can be reduced, said Dr. Satish Khadilkar from Bombay Hospital and Medical Research Centre. “A notable advancement in treatment is that initially medicines were injected but now pills are available for certain symptoms,” he said.
Anjali Vyas, an English language trainer from Pune who suffers from the disease, said she got her first attack at the age of 21, which affected her vision for about two weeks. “I regained my vision after medication. I suffer from relapse-remitting sclerosis, so I have increased symptoms for some time followed by a period of remission. Some people experience a chronic or progressive form of the disease,” she said.
Due to lack of awareness about the disease, a lot of people think it is contagious and treat patients of sclerosis differently, she said. “I spend ₹7,000 per week on my medication, and insurance companies refuse to cover these expenses as the disease is considered to be hereditary. Even though sclerosis is recognised under the Rights of Persons With Disability Act, it becomes difficult to avail of the benefits under the Act as most of the symptoms are invisible and keep changing, making it difficult to determine the degree of disability,” she said.
Renuka Malakar, national secretary of MSSI, said they had started speaking to multiple stakeholders to advocate the rights of the people with sclerosis. “Under the Act, an individual should have 40% disability to benefit from its schemes. However, the criteria should not be applied to patients of sclerosis who display unpredictable symptoms,” she said.