World MS Day 2019 events across India was varied and informative! This year too we saw a considerable increase in awareness about MS & MSSI both at the national & regional level through press coverage in English as well as regional languages. WMSD activities started as early as the 1st week of May along with powerful photographs depicting Invisible symptoms extensively through all our Social media platform & website. We engaged with multiple stakeholders that included central and state governments, professional healthcare individual and organizations, members of Medical and Scientific Advisory Committee & Advocacy experts.
Highlights of the 3 National events were the 2 Press conferences followed by Panel Discussions held in Mumbai in Bangalore on May 29th & 30 respectively & the 1st Roundtable conference of the MSSI – Medical & Scientific Advisory Committee MSSI-MSAC. The main focus was the need to continue engagement/dialogue with all stakeholders in articulating the issues of disease burden, lack of reliable data on MS prevalence in India and reviewing the existing assessment guidelines in the RPWD Act.
Mental Health and good Quality of Life is very critical to PwMS and their families. In order to talk about that we have planned to start a Patient Education & Awareness Initiative, under this we will be starting a Free Webinar series in collaboration with doctors of our MSSI-MSAC.
TheWorldvsMS website a social media platform which talks about the importance of happiness and emotional wellbeing and Brain Health publication was released. It is currently available in English, Hindi, Bengali, Tamil, Telugu and will be up on our website in the coming days
India Multiple Sclerosis Day is a pan India event observed on the first Sunday of February every year. This event is aimed at generating awareness about MS in the society and this is attained by involving MS patients, Caregivers and other Stakeholders from all walks of life. Further, the idea is to gather media awareness as a means to reach out to the masses. When it comes to MS, early detection is imperative to slow down the disease. Thus creating awareness about the signs and symptoms of this disease goes a long way in assuring treatment and effectiveness of precautionary measures, which will contribute to better health conditions of those diagnosed
Initiated in 2016, the purpose of observing ‘India MS Day’, in addition to World MS Day, was to celebrate the occasion at a time of the year that was favourable to Indian MS persons. Given that the essence of observing such occasions is to reach out to hundreds and thousands of people around the country and spread awareness about the challenges of living with MS in an Indian context. Thus, events and campaigns that focus on this issue are observed across all eight chapters in the country.
There is an interesting connection between Bikers and Persons with MS (PwMS)
When one rides a motorcycle everything has to be in tune with each other, acceleration, suspension, alignment, balance and brake then only you can have a smooth ride…
For a second just imagine this…
You are on a bike going on a scenic road going to your favourite destination and suddenly the engine stops working…
What do you think will happen… A Breakdown
This is the exactly what happens to a Person when diagnosed with MS because the Central Nervous system (machine of your body) stops working causing a the Breakdown….
But what is the one thing that Riders and Person with MS have in common situation? They fix the problem, make the best of what they have and carry on with life.
“Alone we can do so little, together we can do so much” Helen Keller
Here are a few videos on the events which took place on IMSD across the country
We are back from ICTRIMS and as promised here’s the update!
In consultation with chapters heads and the governing council members who believed that showcasing MSSI as one of the largest and the only patient welfare organisation having a national presence is critical. We all agreed that now there is a greater need to increase awareness within various ministries (Centre and state) as well as within the medical fraternity especially the neurologist. We identified 3 key areas to work on i) build the National Registry ii) set up the Medical Scientific Advisory Committee & iii) participate in India’s largest neurology conference – ICTRIMS.
While work on 2 of the 3 key areas is underway, we have just attended a very successful ICTRIMS conference. Attending the ICTRIMS with representation from all chapters created the much-desired impact on the services we provide to our registered members. It was heartening to hear almost every doctor mention MSSI and their desire to work with us to help MS persons understand and manage MS better
Our heartfelt thanks to Sanofi Genzyme, Dr Kameshwar Prasad, Dr Suresh Kumar without whose support this would not have been possible. A BIG thank you to 8 chapter heads in making MSSI participation at ICTRIMS a reality!
The National office welcomed its Regional Chapter heads and their representative to Delhi for a 2-day workshop in June 2018. This was the first of its kind workshop where the senior leadership team members came together to brain storm on identifying how to feed into the national initiative of Advocacy and Creating more Awareness amongst different stakeholders like policy influencer & makers.
The 2 days saw interesting and interactive sessions, games, group discussions & working out possible solutions that would help in voicing the need of person with MS in a more focused and sustained manner. Learning about most successful projects from each of our chapters through a Photo Gallery Walk Through was were enriching and inspirational
Our heartfelt thanks to MS International Federation for conducting this!
“How could you drop our baby on the floor like this? Why could you not be more careful, is it that you are jealous of him?” Such events started occurring more frequently. Everyday my anger was increasing as I was getting more and more puzzled with the behaviour of my husband.
Let me tell you about my harrowing experiences and the mental tensions that I went through during the first 20 years of my married life. I was fighting all odds with the moral support of only my parents, brother and a few friends. The fight is not only against the disease but mainly with the society which fails to acknowledge the illness and its effects on patients and their families.
In 1963 I got married at the age of 20 and Mukund was 29, we left our hometown Bombay and went to live in Calcutta where my husband was working in a government office as a Textile Chemist. Initially I did not notice anything amiss but soon things started going wrong. He just could not help around the house, without being clumsy and I thought he was doing it purposely to shirk domestic responsibilities. Unknown to me he was having problems in his office too and also started picking quarrels with me without any reason. I was so unhappy and there was no one in that strange city in whom I could confide. Then came his first serious illness in 1967. He was hospitalized for a long time without proper diagnosis, recovering only after about 4 months of sickness However, problems in office continued due to inability to handle his job.
Ultimately in 1969 we returned to Bombay and he changed his job. I was much relieved to be back in familiar surroundings but very soon the same behaviour problems returned. I never understood why he was under such continuous tension, causing so much irritation. I was pained and hurt and our marriage seemed to be on the rocks. Even though he was well qualified he could not prove his skills at work and as a result his earning capacity never increased. In January 1977, he had a second major illness and various types of treatments were tried again. During this attack he had lost the ability to walk and was totally bedridden till May 1977.
At last in May on the advice of his office doctor we consulted Dr. N.H. Wadia. He diagnosed the disease as Multiple Sclerosis, which made no sense to us, at that time, as we had never heard of it. Dr. Wadia told us that it was a rare disease in India, but it was quite common in western countries. I thought he might have got it when he was studying in Europe. I was shattered by the circumstances and with one of my Doctor friends’ advice I joined British Council Library and started reading books about MS, in earnest. This helped me tremendously to understand the disease and recognize the turmoil my husband was going through, as I started understanding him better.
By that time his mobility was further affected. It was very difficult for him to commute daily to his factory – 1 ½ hour journey by local train. In crowds he suffered frequent falls, to add, his disability was not visible. If people see a blind person or other visible disabilities they are considerate and careful but for my husband who till then looked the picture of health, nobody in that jostling crowd realized his need for help. When I approached his Superiors at work, for his transfer to a branch near our home, they flatly refused. They, like the jostling train crowds, did not realize that he was handicapped, a person who required special consideration. If he could not travel to the factory then he should resign, we were told. How could we possibly live without a job when our son was still at school and I was then just a housewife and we needed the income for our existence? With sheer will power my husband continued his daily travel to the factory, but I was worried at home till his safe return.
Again it was Dr. Wadia, who suggested I meet Mrs. Rehmut Fazelbhoy, a well-known Social Worker, who could help us. Mr. Tobaccowala, Chairman of Voltas, who was keen to start Services for Multiple Sclerosis in India, had called a meeting with Neurologists and a renowned Social Worker Rehmut, where Dr. Wadia had met her.
It was the turning point in my life, when I met Rehmut Fazelbhoy in 1984. First time I had met a stranger to whom I could pour out my pent up feelings, problems and fears. This was the day our Organization started functioning with my husband as the first MS Patient. With so much experience as a renowned Social worker in the field of Blind welfare, Mrs. Fazelbhoy convinced my husband’s employers easily about the need for his transfer to a nearby branch and within a week the orders were passed. This was the first instance of experiencing the strength of the Institution behind the needy people.
Now my husband and I were both motivated to take an active interest to help with forming a Society which could give assistance to other MS persons. I offered my services as a Jt. Hon. Secretary with Mrs. Fazelbhoy as Hon Secretary and together we worked on the Constitution in accordance with Government requirements. Late Mr Keki Randeria, father of Cawsi, a second MSPerson to join the MS Movement, helped us a lot in this task.
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. Ever since, we have grown multifold, into a strong Oak Tree with sturdy branches, giving respite in our shade, spreading branches all over, India – Benagluru Chennai,Delhi, Hyderabad, Kolkata, Mumbai Pune. We are a dedicated work-force, striving to do our best to improve the quality of life for persons suffering with Multiple Sclerosis. Then gradually over the years, we have introduced many useful Projects which are undertaken at every branch.
Since this crippler disease starts in young adulthood and is not a killer, the patient lives a normal span of life but most of them slowly become more and more disabled and ultimately may become bedridden. So the whole family of the MS patient gets affected financially, physically and emotionally for many years.
Hence, try to lighten some of their burden by providing various Services such as Counselling, Home Physiotherapy, Home Nursing, Home help for Caregivers, Medical Reimbursements, Aids and Equipments etc. We also help the Patients to get Disability Certificates, which enable them to avail of several benefits offered by the Govt. to the disabled. In addition, we also organize – Free Medical Camps, Seminars and Workshops, Recreational Programmes for Patients and their Families. Now our Visionary Project on the anvil is to start a Rehabilitation cum Respite Centre, bringing about transitory relief to both the patient and the stressed caregiver. This is the need of the time.
In India for other Disabilities, there are many Institutions who have got sufficient resources because people know of them, but the general public are mostly unaware of Multiple Sclerosis and its effects. So continuous awareness is most necessary.
When we read about the facilities offered to MS and other ‘challenged persons’ in Western countries, I wish we could provide ours with the same and of course we will try our best, because we must never give up hope. Still many Public Buildings do not have Elevators Hand Railings or Ramps. Public Toilets for Disabled are nearly non – existent, as also in the field of Public Transport there are no special facilities for disabled. Hence, mobility is severely affected and they become unnecessarily and unnaturally home bound, and ultimately social outcastes. Therefore, I strongly feel we must take on campaigns to create Public Awareness about the difficulties faced by MS and all such Disabled Persons.
I wish to personally Thank, each and every person associated with the MSSI – at any point in time, for lending a hand in making my – Dream come True!
-Ms. Sheela Chitnis