On World Multiple Sclerosis Day, patients call for better awareness, treatment

Over 2,000 people in Karnataka have multiple sclerosis. However, the exact prevalence remains unknown, impacting patient support efforts, Multiple Sclerosis Society of India in Bengaluru found.

Bengaluru: When Bengaluru resident Arun Mohan was diagnosed with multiple sclerosis over eight years ago, it pushed the sales executive to become a life wellness coach to extend support to people.

Now, a member of the governing council and executive committee of the Multiple Sclerosis Society of India (MSSI)’s Bengaluru chapter, Arun works to raise awareness about multiple sclerosis, a chronic neurological disorder occurring when the immune system mistakenly attacks healthy tissue in the central nervous system, which includes the brain and the spinal cord. Multiple sclerosis has no cure.

MSSI revealed that a little over 2,000 people in Karnataka have multiple sclerosis. However, the exact prevalence remains unknown, impacting patient support efforts.

"There is a disparity in the numbers due to a lack of awareness. Symptoms of multiple sclerosis often mimic those of several other disorders, particularly Parkinson’s," said Mohan, who noted that he was treated for Parkinson’s for six months before receiving his diagnosis for multiple sclerosis.

MSSI said a little over 2,000 people in Karnataka have the disease. However, the exact prevalence of multiple sclerosis is unknown, affecting patient support. Depending on the severity and location of nerve damage, multiple sclerosis can cause blurred vision, dizziness, tremors, speech issues, bladder issues, stiffness of lower limbs, and motor issues, among other symptoms.

Diagnosis occurs after an MRI of the brain, spinal cord and optic nerve, said senior neurologist Dr Rajesh B Iyer. In some cases, a lumbar puncture might be required to collect cerebrospinal fluid for testing.

Although the incidence of multiple sclerosis in India is not as high as other neurological disorders such as migraines or strokes, Dr Iyer has treated nearly 500 people with multiple sclerosis over the past 20 years and diagnoses at least one new case each month.

"The incidence has increased compared to 20 years ago, likely due to better diagnosis and improved access to resources, especially in urban areas. While there is no evidence that genetic factors cause multiple sclerosis, environmental factors do play a role," he explained.

If not diagnosed and treated early on, roughly half of the patients with multiple sclerosis will be disabled and wheelchair-bound in 15 years, he added.

Multiple sclerosis is not covered by health insurance. According to Arun, the average cost of treatment varies depending on the type of medication, ranging from Rs 10,000 to Rs 1 lakh per month.

Under the 2024 state budget, caregivers of individuals suffering from four diseases, including multiple sclerosis, will receive a monthly allowance of Rs 1,000.

Early diagnosis

The theme of this year's World Multiple Sclerosis Day on May 30 is diagnosis, with the tagline 'Navigating MS Together', emphasising on the importance of early diagnosis and treatment of the disease.

Need for survey

Ravi Ganeshan, a disability rights activist with the Fourth Wave Foundation, emphasised the need for a statewide survey of people with disabilities, noting that there has been no updated database since the 2011 Census.

"We are hoping to conduct a comprehensive survey of disabilities in the state soon,” Das Suryavamshi, State Commissioner for Persons with Disability, Karnataka, told DH.

He said he has written to a few private hospitals in the city to provide free treatment for people with multiple sclerosis.