Multiple sclerosis (MS) is a chronic progressive autoimmune disease of the central nervous system affecting it unexpectedly and repeatedly, resulting into devastating disabilities in young people at the prime of their lives. The disease needs a lot of awareness among society with its acceptance and its management. Ms. Sheela Chitnis is one such great activist who has dedicated her life for the MS awareness build in India. Dr. Anju talks to Ms. Sheela Chitnis, Chairperson-MSSI
Anju: When did Multiple Sclerosis Society of India (MSSI) start? What was your personal experience that led its formation?
Sheela: MSSI is Charitable Trust, working for the welfare of patients suffering from Multiple Sclerosis (MS). MSSI was started soon after my husband Mukund was diagnosed with MS on 26th July 1985. But his diagnosis took 14 years which was such a harrowing experience! I just hoped that other people should not face the same, and that was the foundation of MSSI.
I just hoped that other people should not face the same, and that was the foundation of MSSI.Mukund was 29 when I married him. He was a fine worker serving as a Textile Chemist. As we moved to Calcutta, I started noticing clumsiness in his routine. I thought he wants to shirk off the domestic chores, but then I learned about his dipping performance and tiffs at his office also. Always so fond of reading, now he would not read a thing! The biggest shock came when he slipped our three months baby boy out of his hands! I wondered if he is jealous of him.
Such is the plight of this disease. The MS patient himself is baffled by the way his body behaves. Mukund got severely ill being hospitalized for four months, but we got no diagnosis. We decided to move back to Mumbai, where I had family support and the place was familiar. In 1977, he had a second major attack and he was bedridden for 5-6 months. Lastly, we happened to consult Dr. N.H. Wadia, who diagnosed it as Multiple Sclerosis. We had no clue about it!
I joined British Council Library and started reading books about MS. This helped me tremendously to understand the disease and recognize the turmoil my husband was going through.
Anju: MS is a debilitating disease with huge uncertainty. Based on your experience, how do you make people understand Multiple Sclerosis, especially the family members and the employers?
Sheela: Patients with MS look normal initially and often their fatigue or lack of energy is overlooked by family members, employers, etc. As the disease progresses the patients may start showing more symptoms- lack of coordination, imbalance, double vision and confusion and eventually they start crippling more. My advice to family members is not to ignore the initial symptoms or complaints, but go for a clear diagnosis, consult a neurologist.
The most unfortunate part is that MS disability is not VISIBLE. But these people may need more care, compared to a blind or another handicapped person.
The most unfortunate part is that MS disability is not VISIBLE. But these people may need more care, compared to a blind or another handicapped person. When my husband’s mobility was further affected, it was very difficult for him to commute daily to his work by local trains. When I approached his Superiors at work for his transfer to a branch near our home, they flatly refused and suggested resignation as the solution. It was very painful! How can people turn so callous to the needs of MS patients and their dependent family members? I was a housewife and our son was yet in school. It was his sheer will power that my husband continued his daily travel to the factory. But I used to be worried till returns home safe.
Eventually, with the help of a social activist, Mrs. Fazelbhoy, we were able to get his transfer. I would hope the employers are made more aware of these conditions and be more compassionate to accommodate the needs of the MS patients and their families.
Anju: Who were the key people behind MSSI? What were the initial activities that made people come together?
Sheela: Mr. Tobaccowala, former Chairman of Voltas, was the key activist to start MS Society in India. He called a meeting with Neurologists including Dr. Wadia, who was my husband’s neurologist and social Worker Rehmut Fazelbhoy, who had helped with my husband’s transfer.
Our organization started functioning with my husband as the first MS Patient. It was a happy day, when on July 26, 1985; the MSSI, with 3 MS Persons, was formally registered in Mumbai with the State Government as a Charitable Society.
We started visiting patients, interacting with their families and having get together. We met Doctors, General Hospitals, wrote articles in the Newspapers to create awareness on all fronts. Soon we registered 20 cases of MS. A few years later, in 1989 – The 1stInternational MS Conference in Delhi was held, where more than 250 Delegates from 22 countries attended.
There were some crises situations in between like the office space issues, people leaving, but then I stood steady. Today we have eight chapters and support groups in Mumbai, Delhi, Pune, Kolkata, Indore, Hyderabad, Chennai, and Bangalore.
What are key services and advocacy pursued by MSSI?
This disease that starts in young adulthood is a crippler, with patients living mostly a normal span of life. The progression gets disabling, sometimes leaving the patient completely bedridden. So the whole family of the MS patient gets affected financially, physically and emotionally for many years. We try to lighten some of their burdens by providing various services:
- Education and awareness: In India compared to other disabilities, people are mostly unaware of Multiple Sclerosis and its effects. So continuous awareness is most necessary and that is the primary goal of MSSI. With the dawn of social media, we need young volunteers to spread awareness
- Counseling: There are a lot of issues and struggle with MS patients and their caregivers which can be resolved by a third party, who has experience of both the sides. The patients tend to get irritable and both MSPs and caregivers need psychological and emotional support which we provide
- Physiotherapy, Home Nursing, and other mobility aid: We provide physiotherapy, home nursing, home help for caregivers, home visits to lonely patients by volunteers. We also look into medical reimbursements for the needy, free methyl prednisolone injections & other subsidies. We provide products mobility aids, air/ water beds, incontinence products etc.
Engaging more people: We need to enroll more and more people to help them and support each other. We take support from Neurologists for the data. We organize Annual Free one-day Multi-Disciplinary Medical Camps, seminars, workshops and other recreational programs for patients & their families.
- Support from the Government:
- Multiple Sclerosis is recently included in the Disability Act, but the certificates need to be issued to all the patients irrespective of the degree of disability; because the disease is uncertain. This enables them to get several benefits that the Govt. offers
- We pursue with the Govt. to minimise taxation on the drugs.
- We advocate for providing a barrier-free environment at public places- transportation, accessible buildings, toilets so that the patients are not unnaturally home-bound or social outcast.
- Positive Life Message: We help patients living more positively. We do a lot of social events inviting patients and caregivers. They leave with a lot of positivity in their hearts.
How many cases are registered with MSSI? Is there any link with heredity? Being near Equator, are Indians less impacted?
Incidentally, the near equator countries are not that forward compared to the other developed countries. Initially, MS was considered a rare disease in India. Although now with increased MS Awareness & improved diagnostic methods such as MRI scans, the number of cases is greatly increased to the estimation of over one lakh. Yet, we have only about 4000 registered cases through our nine branches in the Metro cities.
There must be more people with MS, who would not have been diagnosed. Vast numbers of MS patients do not approach Neurologists; instead, they consult GPs, orthopedic doctors, Ophthalmologists etc. who may not recognize their MS. Many families wrongly consider it as a social stigma & do not disclose it to anyone or approach to the MSSI for our services. Also, we have noticed that many diagnosed patients are still unaware about MSSI’s helping hand.
There is no known heredity associated with it. In India, rarely few cases are known in the same family. This is a disease more common in females with a 3:1 ratio for females and males. Females do have a better prognosis than males.
What are the medications available to treat MS? Do you believe in Alternative healing methods? Also, what are the ways to better manage it?
There is no cure for MS. There are disease modifying drugs (DMDs) known to modify the disease course. For long there were only intravenous or intra-muscular injections, but now there are some oral pills also. However, we never advise on any drugs or procedures, as they should be always advised by the Neurologists.
Alternative methods are good to manage the disease and relieve the symptoms, with or without medication.
- Turmeric is a well-known anti-inflammatory. One should take 1 tsp Haldi powder or decoction of ½ inch Kachha Haldi everyday
- Avoid Hot baths and too much of heat
- Homeopathy is good provided you have good trustworthy doctors
- Ayurveda is good with herbal decoctions, but metals should be avoided
- Yoga is excellent and a must do
- Deep breathing helps overall mind and body relaxation
What is your advice for the people (MS patients or their caregivers) who have lost zeal?
Depression is a common problem for anyone with MS and even their caregivers. It is important to keep social interaction. Sharing always helps you so much, so one must share. One must look for recreational opportunities or cultivate hobbies- music, painting, cooking. Music is therapeutic!
Use of aids or gadgets help in managing the disease and saves energy,
- Use of cane is advised by physiotherapists. It helps the patients’ balance and co-ordinate better, while conserving their energies.
- For cognitive dysfunction use of memory aids, writing pads, smartphone apps- memos etc. are helpful
- Mental and physical both exercises are important