Saturday, March 25, 2017

An Experience to savor

“Thalassaemia”, “Haemophilia”, “Muscular Dystrophy” these were just the very few terms in my dictionary of rare diseases before I attended the Blue Ribbon Symposium on Rare Diseases and Film Festival, a confluence of scores of intellectuals, responsible researchers and a plethora of advocates of the rights of people with rare disease condition in India held at the National Gallery of Modern Art in Bangalore from 17th to 19th March 2017. It would not be an exaggeration to asseverate that the symposium was a watershed in the life of an aspiring public health researcher.

In the two days that I attended the symposium, I was apprised of my own lack of knowledge and surprised at the discovery of rare diseases which afflict one in every thousand (as defined by WHO ). I remember I was reluctant to attend it on the morning of  18th March citing that I had tasks to accomplish but by the end of the symposium I was fully convinced that there could not have been a better investment to my weekend than this symposium. 

 “Osteogenesis Imperfecta”, that was a new word I learnt, I also talked to Archana who shared her experience of living with such a condition. As humans when we get injured sometimes, feeling fortunate is the last thing on our mind but here was a lady who declared with such pride in her voice that she was the fortunate one to have OI for it has made her very strong mentally. When I heard that I was awestruck. Sure, there are so many experiences Archana cannot cherish, she has to walk cautiously lest her bones break, she has little strength physically yet she came across as a giant figure in the symposium. The sense of gratitude that she vibrated despite her debility did not touch me, it filled me with an elixir of real beauty and made me aware of my own functional body. We as humans take our physical bodies so much for granted and continuously contaminate it and poison it with useless things that we fail to realize how much of a blessing it is to have a fit body. I met Soma Shekhar who was a Thal (a person having Thalassaemia). He had founded the Haemophilia Society of India and it has been 25 years since its inception. In an half-hour long conversation that I had with him, I learnt more about Haemophilia.  I was aware about haemophilia for I had read that in my school but talking to Somu was an experience on a level way beyond that purveyed by books. Blood, the most basic survival necessity for all of us if does not clot within a certain period of time can prove to be lethal. What had I done not to have this disease? What had Somu done to have his gene gone slightly berserk and give him Haemophilia? No one knows. Here was I talking to people, trying to learn everything I could about the rare diseases yet parallely a mutiny was slowly raising its head inside my heart. A consciousness was emerging, an awareness unprecedented. These were my redoubtable brothers and sisters, living life no less extraordinary despite knowing the fact that their bodies were slowly atrophying, physically hamstrung yet displaying infectious joie de vivre, a classic example of utopian dreams amidst dystopian realities. 

According to [1] there are currently 72,611,605 people in India living with rare diseases and disorders. Most of them are in rural areas shrouded and ostracised from participation in society under the veil of superstitious practices and prevailing baloney of bad omen attached to their presence. Life is tough for them. An image of a lady whom I saw in documentary , “Walking Mind” that was screened in the film festival is still very vivid in my mind. She was close to fifty years old, having severe OI, unable to move or sit she was sharing her life experiences. She taught me to value every instant of my life when I can be independent and footloose. There were many others who were denied a good education due to their functional limitations, there were few who were fortunate enough to get admitted into schools. It led me to some serious introspection. How many of us really value our education? How many of us realize what it really means to have received a great education? Do we realize what potent weapon education is? Surely, reducing education to just a means to earn a hefty salary would be the definition of a daft. When you see people struggling to get into school, you learn what education is, you learn such fortune it is to be able to complete education without hurdles and if you are conscious you value the opportunities that come with it and become aware of your duties that are coterminous with it. The activities that held in the symposium taught me all of this. 

I also got to learn about gene therapy and its potential and tested effects for the better health management of a person with rare diseases. I was happy to know that Indian research community is working in collaboration with its foreign colleagues and trying to mitigate the challenges imposed by the rare diseases. Dr. Alok Srivastav, Prof of Medicine, Dept of Haemotology and Head, Centre for Stem Cell Research, CMC, Vellore in his comprehensive presentation apprised the audience in non-medical jargon about gene therapy, opportunities and challenges in bleeding disorders. Listening to him was a very informative experience. A doyen of research in such field his understanding was very conspicuous.

An interesting discussion ensued on the importance of maintaining registries for informing better health decisions and that was of particular interest to me. I believe that information technology and data science has immensely significant role to play in the future of health and health care, more so in the quest of meeting the Sustainable Development Goals by 2030. A lot of discussion happened about the need to have a central registry for all health outcomes in the country, which as we know is easier said than done. To this Dr. Srivastav had an interesting answer, he mentioned that maintaining state-wide registry would serve as an initiative which other states could emulate and anticipated that that way a more exhaustive and inclusive registry could be maintained. It was also brought to fore that there must be inter-operability among the registries, which I believe is a very important point. From the public health informatics point of view, the information architecture should be such that sharing data between platforms is not a task which entails re-creation of architecture. Time and again we have debates on the nature of data collection in India and the need for disaggregated data collection for better health decisions and policy making. I always wonder that as learned engineers we often talk about big data analysis and biostatistics but the very premise of application of these techniques, the availability of data and its collection is in shambles in our sub-continent. Notwithstanding the fragmented scenario of health data in India, the endeavors to maintain registries is laudable but far from enough. 
 I believe the concept of film screening gave a beautiful shape to the symposium. Watching the real life stories and learning from them was a precious experience. Films like, “Olivia’s Story”, “Rett syndrome”, “Walking Mind” to name a few made an incisive attack on the darkness of my ignorance and replaced it with a light of knowledge. These films need to be widely shared among the public to create more traction for the rare diseases in world and in India.

The event of painting and clay modelling on Sunday, the last day of the Symposium,  with kids was also a very different kind of experience. As we age we often allow the little, simple and innocent pleasures of life to fall into oblivion, however such kind of activities often refresh us and take us back to our unbridled enthusiasm of childhood years. Being with kids who exemplified artistic acuity in everything they did is too concrete a memory to be so easily forgotten in the sands of time. As Uma Chandru was pointing out consistently, it was a therapy, an “Art Therapy” and I was living it, it was soothing me and cleansing my soul second by second. All of us had participated, kids, adults and elderly alike with supreme pizzazz and vitality which was the best part. I believe there is a child in all of us and we must unleash it time to time, it keeps us young.

Looking back I wonder, if I had spent my weekend finishing some tasks other than attending this symposium I would have lost a deluge of lifelong experience and my ken would have not broadened. Looking back I have also understood that education is a potent social weapon, a panacea to vandalise the existing miseries and anthropomorphic inequalities in our societies. There was one very striking memory that I still carry with myself - no school admitted her but a teacher taught her every day for 8 years for one hour and today this girl is self-sufficient. Her name? Dhanya Ravi. Her confidence, trust in self and exuberance while astonished me on one hand inspired me on the other and filled me with more energy for my own life endeavors.

These words that I have written nothing remotely convey what I felt during my two days at the symposium but the symposium triggered an avalanche of lessons which will be with me for this lifetime. The long term effect of this short term experience is incalculable. I believe such symposiums are indispensable in a civilized society for it ushers a hope and reminds us of that sense of responsibility that all of us have owing to our education.

This article is incomplete without acknowledging that one person who led me to it, my mentor Dr. Thelma Narayan. I would also like to thank Dr. Uma Chandru, Dr. Vijay Chandru and Dr. Namitha A. Kumar who allowed me to participate actively in the symposium. Last but not the least, the venue for the symposium was perfect , the National Gallery of Modern Art, gratitude to their staff in full measure.



  1. What an inspiring experience it is ! Your words hold such great lessons inside. Seriously our functional body is the biggest blessing to us from God. And its very true-'one should value his education' as it plays an important role in building our character, broadening our thinking and enhancing our individuality. Thank You Miss Bhargava for sharing this amazing day with us !

  2. Thank you for an elaborate appreciation.

  3. Inspiring.
    P.S. it is very nicely stated.


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