THIRUVANANTHAPURAM: Merin Theres John, a native of Pathanamthitta, was just 20 and sitting for her BCom examination when the world abruptly went dark in her left eye. It was her first encounter with optic neuritis —an inflammatory condition that often serves as the initial warning sign of multiple sclerosis (MS).
“It was devastating,” Merin recalls. “I fell into a deep depression. I looked completely fine on the outside, but my body was attacking itself from within.”
The unpredictable relapses, triggered by stress, forced her to abandon her dream of becoming a chartered accountant. Though she later cleared bank exams to secure employment, her daily battle against body pain and chronic fatigue continues.
“Because there is no visible problem, people think I’m just being lazy,” she says. To fight this isolation, Merin joined fellow patients to form MS Harmony, an advocacy group pushing to make Kerala an “invisible disability friendly state”.
The disease primarily strikes people aged 20 to 40. Nearly 60 to 70% of the patients show no visible physical impairment initially, yet their symptoms can change instantly.
“Even a disability assessment board cannot easily recognise it,” says Dr Sureshkumar R, lead neurologist at Renai Medicity, emphasising that while early detection is crucial to prevent irreversible damage, under-detection remains a massive hurdle.
This lack of visibility feeds into harsh social scepticism and bureaucratic walls. “Since it is an invisible disability, it is difficult to convince others or get their support,” Merin explains.
Healthy-looking patients are routinely denied disability certificates, making it a constant struggle to access reserved train coaches or workplace accommodations.
Data from the Indian Council of Medical Research (ICMR) indicates an MS prevalence rate of 8 to 11 cases per lakh population, meaning Kerala likely has 2,500 to 3,000 patients. Yet, the official registry reflects a starkly different reality. While the Kerala Social Security Mission (KSSM) recognises MS as one of its 21 official disabilities, only 200 patients are registered on its portal. Meanwhile, separate data from major treating centres reveals at least 650 spectrum cases. This statistical gap creates a frustrating Catch-22 for healthcare planning.
“The government can only budget and structure dedicated healthcare services when accurate data is reflected officially,” stress Dr A A Harish and Dr Neethu Suresh, professors with the medical colleges in Alappuzha and Kottayam.
Financially, the disease is ruinous. Crucial therapies are heavily restricted, available through KSSM at only two government facilities statewide. Also, the Central insurance scheme, Ayushman Bharat (PM-JAY), excludes MS entirely. Patients point to Karnataka’s localised model, which covers the condition, as a vital blueprint. Dr Sruthi S Nair, head of the MS Clinic at SCTIMST, advocates urgently integrating MS into Kerala’s Karunya health insurance scheme to prevent widespread patient bankruptcy.
A quiet paradigm shift, however, is brewing. Recently, at the IMA House in Kochi, patients, caregivers, and neurologists gathered under the MS Harmony banner to demand structural change. Launching the collective, Ernakulam MP Hibi Eden drew on the precedent of past spinal muscular atrophy (SMA) advocacy — which successfully brought down exorbitant drug prices — and committed to raising the MS crisis on both the state assembly and parliamentary floors.
For Merin, the group offers essential solidarity. For the collective, the ultimate goal remains structural. As MS Harmony president Dipu T Thomas states: “Our ultimate goal is to transform Kerala into India’s first ‘invisible disability’ friendly state, demanding that a modern welfare state learn to care for the vulnerabilities it cannot see.”