Sheela Chitnis is an extraordinary woman who embarked on a remarkable journey filled with unexpected challenges. With dreams of a blissful life, Sheela married Mukund in the year 1969. However, shortly after their marriage, Sheela started noticing perplexing behavior from Mukund. At first, she brushed off his clumsiness and apparent avoidance of household responsibilities as typical male behavior. But her frustration reached its peak when Mukund accidentally dropped their infant due to inexplicable actions.
Little did Sheela know that her husband’s behavior was a manifestation of an underlying and rare ailment. In January 1977, Mukund was struck by severe illness, making him immobile and confined to bed. Determined to find answers, Sheela sought medical advice from Dr. N.H. Wadia, a reputed Neurologist. It was during this crucial consultation that this baffling ailment was finally identified as Multiple Sclerosis (MS), a term that was unknown to them at that time.
Driven by determination, Sheela wanted to desperately understand her husband’s condition and so she proactively joined the prestigious British Council Library to learn more about MS. Immersed in extensive reading and research, she delved into the depths of MS, acquiring deep knowledge about MS, and started cultivating empathy for her husband’s condition.
Sheela’s unwavering dedication proved to beincredibly valuable, her learning of the disease fostered a stronger connection with her husband. This newfound knowledge brought them closer and provided the steadfast support required to navigate their difficult journey together.
Multiple Sclerosis (MS), a rare disease, emerges as a condition that disrupts the functioning of the Central Nervous System. Its unpredictable and recurrent nature poses significant challenges for individuals affected by it. Since this disease primarily impacts young individuals, potentially resulting in disability,this explains Mukund’s clumsiness and inability to focus. These impairments were a direct consequence of his compromised nervous system, robbing him of control over his own body and making even the simplest daily activities a formidable endeavor.
“Myelin” envelops and safeguards the nerve fibers in the brain and spinal cord (CNS), similar to how insulation protects electrical wires. When any portion of this myelin covering is damaged or destroyed, it disrupts and distorts the nerve signals sent to the brain. This disruption is what gives rise to Multiple Sclerosis.
Multiple Sclerosis is one among many rare diseases in India. It is estimated that there are around 450 different types of rare diseases in India.The lack of awareness and the stigma attached to these diseases have created additional difficulties for patients who are affected by them. The exorbitant cost of therapies has led many patients to opt out of treatment altogether. Renowned experts in the healthcare field emphasize that the success of policy measures addressing rare diseases holds immense significance, as it holds the potential to shape the future of countless patients, like Mukund, who find themselves bewildered and stranded while grappling to comprehend their ailments. It is imperative to provide adequate support and resources to individuals navigating through the perplexities of rare diseases, ensuring that they receive the care and understanding they desperately need.
Sheela then connected with Mrs. RehmutFazelbhoy, a social worker, and Mr. Tobaccowala, the Chairman of Voltas, who also shared a keen interest in establishing services specifically tailored for Multiple Sclerosis in India. Together they started the Organization, with Mukund as the first MS patient.
On July 26 1985 with 3 MS Persons, the Multiple Sclerosis Society of India (MSSI)was formally registered in Mumbai with the State Government as a Charitable Society. MSSI offers a range of comprehensive services to support individuals affected by Multiple Sclerosis (MS):
- Counseling: MSSI provides counseling services to help individuals and their families cope with the emotional and psychological challenges associated with MS.
- Home Physiotherapy / Occupational Therapy / Economic Rehabilitation: MSSI facilitates home-based physiotherapy, occupational therapy, and economic rehabilitation programs, empowering individuals to regain independence and enhance their quality of life.
- Free treatment at Shushrusha Hospital Dadar & Vikhroli: MSSI ensures that patients in need receive free treatment at renowned medical facilities like Shushrusha Hospital in Dadar and Vikhroli.
- Medical Reimbursements for Needy Patients: MSSI offers financial support by providing medical reimbursements to patients who require assistance with healthcare expenses.
- Free Medical Camps/Workshops/Seminars: MSSI organizes regular medical camps, workshops, and seminars to disseminate knowledge, raise awareness, and facilitate learning opportunities for individuals, caregivers, and healthcare professionals.
- Recreational Programs, Picnics, Programs for Caregivers: MSSI recognizes the importance of recreational activities and organizes programs, picnics, and events to promote social engagement and foster a sense of community among MS patients and their caregivers.
- Mera Sapna – Fulfilling Wishes of MSPs: MSSI’s “Mera Sapna” initiative aims to fulfill the dreams and aspirations of individuals living with MS, helping them achieve their goals and experience moments of joy and fulfillment.
- Free Mobility Aids: MSSI provides essential mobility aids such as wheelchairs, walkers, and diapers free of cost, enabling individuals with MS to navigate their daily lives with increased comfort and mobility.
- Monthly Groceries for Needy Families: MSSI extends support to economically disadvantaged MS-affected families by providing monthly groceries, alleviating some of their financial burdens, and ensuring they have access to basic necessities.
MSSI actively promotes awareness about Multiple Sclerosis (MS) through various channels:
- Media & social media: MSSI utilizes traditional media platforms and social media channels to disseminate information, share personal stories, and raise public awareness about MS.
- MS Walks / Marathons / Bike Rallies: MSSI organizes MS Walks, marathons, and bike rallies to bring people together, raise funds, and generate awareness about MS within the community.
- Documentaries on MS: MSSI collaborates with filmmakers and production teams to create insightful documentaries that shed light on the experiences of individuals living with MS. These documentaries serve as powerful educational tools to increase awareness and understanding.
- Distributing Informative Brochures and Pamphlets: MSSI actively distributes informative brochures and pamphlets containing essential information about MS, its symptoms, treatment options, and available support services. This helps in educating the public and reaching out to those who may be affected by or interested in MS.
To improve public knowledge about MS, reduce stigma, and foster a supportive environment for individuals living with the condition.
MSSI, with its headquarters based in Mumbai, operates multiple branches across prominent cities in India, including Delhi, Kolkata, Bangalore, Hyderabad, Pune, Chennai, and Indore.
Despite being 80 years old, Sheela Chitnis, the Chairperson of MSSI, continues to demonstrate unwavering dedication in her efforts to establish MSSI as a pivotal platform for enhancing public knowledge about MS, combating stigma, and nurturing a compassionate and supportive environment for individuals affected by the condition. Her tireless commitment serves as an inspiration to others and reinforces the organization’s mission of making a meaningful impact in the lives of those living with MS.
Multiplesclerosis Society of India
Head Office & Mumbai Chapter. 259, Seeta Sadan,Gr. Flr.,Flat No.2, Opp.Gandhi Market,Sion Road (W), Mumbai-400022
Tel:24037390/7399
E-mail:mssimumbai@gmail.com
Website:www.mssocietyindia.org/
www.msif.org