Saturday, November 17, 2018

My bones break but they do not break me

Indian Osteogenesis Imperfecta Foundation (IOIF) visited Dhanya Ravi at her Jeevan Bima Nagar home as part of the foundation’s endeavor to gather stories of people winning over Osteogenesis Imperfecta (OI)  and spread awareness about it in the community.

Dhanya Ravi is a global name, she is a motivational speaker, a flamboyant woman and an innocent child at heart. Dhanya has a purpose in life, a purpose to create traction and awareness about OI and spares no moment to work towards it. Like a hero she has tackled all the hurdles in her life and acquired a calm demeanor tantamount to that of a wise saint. This article is the story of Dhanya Ravi.

Dhanya was born with a femur bone fracture. The swelling took few days to appear. The fracture was diagnosed but OI was not. Her constant and unending cries owing to the pain would not subside and this caused her parents much anxiety. At that time, due to the lack of technologies and inexperience of doctors regarding OI, it was challenging to diagnose it.  It would take another week and multiple consultations with doctors to figure out that Dhanya was born with a rare disease - Osteogenesis Imperfecta. “From then on”, she says, “it was a journey to many doctors for her parents to understand more about the condition and to investigate about future steps”. It was finally at Christian Medical College (CMC), Vellore that they met a doctor who not only explained to them about the condition but also encouraged them to accept the truth and motivated them to do the best as parents for Dhanya. One more thing that differentiated this doctor from the rest was his empathy and sense of connectedness with Dhanya’s parents during their extremely emotionally vulnerable and psychologically troublesome time. It was the guidance and counselling they had received from the doctor that helped them move forward, embrace the situation and prepare selves for the challenges to come. Dhanya emphasizes that every doctor must be trained to handle such situation(s) so that the parents find it less difficult to accept it and gain a perspective on nurturing the child.

Since OI causes multiple and recurrent fractures, Dhanya’s parents had to take her to hospital quite often. During one such incidence, while coming back from the hospital, Dhanya had another fracture. After that Dhanya’s father was advised by doctors to restrict the travel and movement. Eventually, Dhanya’s doting father also learnt how to fix a fracture. Rodding as an option that time in Dhanya’s case was slightly unclear. There was lots of confusion and lack of clarity. She says, “Either the doctors were not clear, or my parents did not know or my health was not allowing the surgery”. In times like these, it is not easy to arrive at a decision regarding surgery or operation. Lack of knowledge and research in this domain can be held accountable. 27 years down the line, however, times have changed states Dhanya. She elaborates:
“Nowadays there is relatively a greater awareness about rodding, doctors are more confident because technology has evolved considerably. Rodding is increasingly practiced in infants now.”
At this point she emphasizes that she is not regretful but concerned about the way in which the diagnosis of OI is handled both by doctors and the parents. She says that research ought to be done by both the parties after diagnosis as to how to address it. Quite emphatically she also asserts that the upbringing of the child ought to be focused on making him/her empowered and independent while maintaining a careful balance between care and excessive care.

Although it must have been difficult for Dhanya to come to terms with her own condition growing up, she declares that embracing OI was not tough. She had surrendered and accepted it not with regrets but immense gratitude. Dhanya could not receive formal education for schools were skeptical about her health and safety during the premises.  However, there was one humble woman, Victoria, who would home-school Dhanya for ten years, absolutely free of cost. For those who have not heard Dhanya, she speaks an impeccable English. (By writing this we do not imply that English speaking ability proves education or an inability hints at the lack of it) Dhanya attributes her fluency and hold over English language entirely to Victoria.
“But more importantly”, she says, “that it was parents’ support and optimism about life that has influenced me the most”.
Victoria taught Dhanya to read, write and learn and one of Dhanya’s friends shared curriculum books with her. This is how learning blossomed for her. As Dhanya grew up, computer and books became her friends. No wonder Dhanya is a wonderful writer, does content writing as a freelancer.  She also maintains a blog and an online space on YourQuote titled, “Matter of Thought”. It was blogging which led her to explore more about the world of internet before venturing into Data Entry work.
She says that even though the money was less but it was not about money, it was about the feeling of being engaged and contributing towards the society in her own unique ways.
For a long time, Dhanya was also associated with Amrithavarshini Charitable Society for Osteogenesis Imperfecta after coming in contact with Latha Nair, the founder of the organization. The story of this connection goes back to Dhanya’s encounter with Binu Devassya, a young kid with OI,  who needed money for his medical surgery. She had read about Binu in the newspaper. The news was advertised by Binu's supporters. Dhanya introduced her group of networking friends with whom she was associated during that time to Latha Nair with the intention to help Binu. This act of self-less care and empathy led Dhanya and Latha to cross each other’s paths. Mysterious that Dhanya is, all this while, it was not known to Latha that Dhanya also had OI. She says,
"Amrithavarshini is like a learning institution for me where I was able to connect with people of a similar health condition, Beyond a positive socialisation it helped me learn from each others’ experiences."
This is just one of the many acts by Dhanya from which we can learn the meaning of true selfless service. With Amrithavarshini, Dhanya began creating awareness about OI through public speaking, news shows and TV interviews. Currently she is active in mobilization and sensitization for OI and rare diseases individually and in collaboration with different non-profit organizations (NGOs). In her words:
“Creating awareness about OI and rare diseases, that is my goal and vision in life”.
She dreams of an inclusive India, “being together” she says. Talking of creating awareness about OI, Dhanya has also been a speaker at TED, interviewed by International newspapers and covered in magazines. Her purpose has brought her to meet Late. Shri A.P.J Abdul Kalam about whom she speaks with genuine respectful admiration. Recently, she also met Sadhguru Jaggi Vasudev at IIM Bangalore and requested him to spread awareness about OI and rare diseases. The video conversation of  Youthandtruth is published on youtube by iWeedastic at https://youtu.be/g2cKqVkKQIY. Dhanya has also mentioned about this meeting on her blog here.


On a serious note Dhanya mentions that since OI is a genetic disorder, it is critical that the couple get tested before planning childbirth and that the mother is also tested mandatorily in the early phases of pregnancy. (We want to inform our readers that genetic examination is affordable.) She also states that over the period of time she has learnt to handle fractures herself and the accompanying pain without being overly dependent on painkillers. Obviously this means that her mental strength has soared high.

We asked Dhanya about her message to the world, particularly for youth, in such tumultuous times where stress and depression is becoming so pervasive. She articulated it very beautifully and said,
“My bones break but they do not break me. Life is all about challenges, struggles, cries but never forget your purpose. My times can be bad, or good or even horrible but I never let the purpose of my life go out of sight. There are a million things one can do, everyone has a unique contribution to make to the society. Life is such a precious gift, never give up on life. Sometimes just hug yourself and say, ‘Its okay’.”
This statement is immensely powerful and a good reminder of the fortitude that all of us possess naturally due to the Grace of Lord. Lastly, Dhanya concluded the interview by saying:
“I do not wish another generation to be born with a condition like this, that is the whole point behind my being. My purpose is to create awareness and traction about OI so that it can be prevented and appropriately handled. My vision is that if a child is born with rare disease, practical steps are taken to ensure that life is smooth for both the child and the parents. In this respect, doctors have a huge role to play. They have to become physicians, counsellors and advisors at the same time to provide courage and support to parents on diagnosis of the disorder.”


The foundation immensely thanks Dhanya Ravi for taking out time to talk to us and share her phenomenal life with us. Dhanya Ravi is a force to reckon with. She is not only a flag-bearer of the movement to create awareness about OI and rare diseases but also a light that guides us all to live a life of selfless service.

The foundation also deeply praises Dhanya Ravi’s parents for forever holding her hand, setting an example for the entire world and making all of us believe that:

“Happiness can be found even in the darkest of times, if one only remembers to turn on the light.”― Harry Potter and the Prisoner of Azkaban"

Acknowledging Dhanya’s relentless efforts to create traction about OI and rare diseases, the Ministry of Social Justice and Empowerment, Government of India has conferred National Award for Empowerment of People with Disability – under the category ‘Role Model  on Dhanya Ravi very recently. The foundation congratulates Dhanya and her family and wishes her all the best for her future endeavors.

(Interviewed by Yesoda Bhargava)

Monday, November 12, 2018

When its cold....

When its cold , 
remember there's a fountain of warmth
inside of you.
That fountain of yours,
which still warms me,
when I shiver in the sunny mornings,
or warm nights. 

When its cold, 
remember the warmth of your touch,
which could turn every snow flake in my heart,
into a beautiful dew on a leaf at dawn.

When its cold, 
remember the times when Love has warmed us,
in its most innocent and unvarnished forms,
and made us strong humans,
to tackle any blizzard or storm. 

When its cold,
remember the warmth of your smile,
which stills warms my heart and soul,
and spread that warmth around you,
it will make it a warm cold,
the warmth of which, My Dear, 
only you'd feel. 

When its cold,
remember the warmth we planted in each other's heart,
and dream of an even brighter and sunnier future,
with Him who never let you go. 
Remember His love and warmth dear,
And this shiver will quiver in your presence,
and soon turn into 
Spring ,
which would bloom, 
learning from only you, 
the meaning of Warmth, My Dear.


Wednesday, October 31, 2018

So Easy

So easy to get lost in the dust of the world,
So easy to put a veil over the head and 
hide one's uniqueness, hide one's own self,
in this world. 

So easy to do the easy, 
and forget about the climb that takes us
to peaks beautiful and clouds unexplored. 
So easy to become an accepted entity,
discarding the voice within,
the real identify, the true identity. 

So easy to never know the grind,
to never know the pain of trying,
to never taste bleeding of the heart,
and face the silent cries in the night. 

So easy to do the common ,
to dream the common, secure, dreams, 
to sail in the silent sea,
and to ride the calm horse. 

So easy not to fight and just live,
waiting to die with gold trapped in banks,
forgetting death is every moment spent,
without thinking of the greater good
of our brothers and sisters,
forgetting that death is not supporting
the dreams of our brothers and sisters,
on this journey of redemption.

So easy to be indifferent, 
So easy to stop "being love",
when romance is over,.
So easy to forget her, the Beloved,
when Her ship sails afar.
So easy to settle ,
to make mouths shut,
and make  soul wail and scream,
and thereby dishonour life.

So easy to feel weak, to tremble,
to shake and to weep,
in the face of seemingly big mountains,
in the face of huge oceans,
and in scorching heat of sun.

So easy to live like dead,
while still being alive. 
So easy to become a victim,
while still being a warrior.
So easy to give up,
while the time aint up.

So easy to forget,
the Truth,
that actually makes life 
So easy.

Aint nothin supposed to be easy,
Gotta Rise, Grind and Shine,
Every Single Day,
till death bed. 




Friday, October 19, 2018

Why slow down, why not curb? Why not destroy? Why not vanquish? Why not uproot?

I am a biostatistics student. Since, I am not yet in a graduate school most of my learning occurs by reading research papers, journals, books, magazines, YouTube videos and of course, discussions with my mentor. I enjoy this type of learning as well, it is unhinged, full of exploration, has elements of direction and focus and lots of room for creativity and unbridled flow of thoughts. Thanks to some concrete experience in applied probability and statistics, now I am able to understand the statistical analysis presented in the research papers, used to shake me before. The only sections I used to read were introduction, discussion but now I can not only read but also make sense of the methodology of statistical analysis and sometimes question and counter the approach discussed. This is fun actually, learning more about what you love and feel connected to. In the process I read a lot of research papers.  And very often I observe a common denominator across most of the research papers. This post is about that observation. 

Most research works identify the risk factors associated with disease onset, progression, multi morbidity and ultimately mortality. In the conclusion they often recommend that policies and strategies be tailored around the findings to reduce disease onset, progression and concomitant changes. But I got a question here! In a population, there are always people who did not get a disease condition under consideration, why cannot we learn from their behavior adjusted for all other parameters like socio-economic conditions, anthropometric measurements, the reasons they did not get that disease? Wouldn't that be useful as well? The focus on investigation of the preventive practices and behaviours in addition to the risk promoting behaviours? For a long time I also did not think all this, but now I do seem to. I guess the reason behind this is that the way I read has improved, rather than devouring 5 papers in a day and understanding superficially, I read 3 and read them in the best possible way - very slowly, pausing multiple times to think and ponder upon what I read, question it, debate on whats stated , scribble some notes and then proceed ahead. So, today when I was reading this thought which is the soul of this article came to my mind. 

So I began recalling such studies which have actually studied preventive behavior and shown that it helps arrest, prevent and reverse the chronic diseases. Such studies are replete in the nutritional sciences, lifestyle medicine, in which people radically altered their diets and gifted selves a better and healthier version of their own selves. Definitely then some work is happening, but to me there appears a gap. The research studies which work with data on human subjects can also attempt to glean factors that led one to stay risk free. Here comes the utility of cohort studies.  And therein lies the challenge, the challenge of conceptualisation of different risk-free states. But if you think more on this, it ain't a rocket science, trust me. I am thinking, I am thinking because that is what I wish to incorporate in my work and thought process - The Practices Which Led to Better Prevention Against the Risk of Diabetes as Compared to Those who were diagnosed with it. Speaking concretely, it is simply not enough to find out what will slow down the progression of a disease to other co-morbidities but it is vital to find out how the disease progression got arrested and then reversed. Better still it is vital to find out how those who did not get the diagnosis behave in their lives. We have trials which compare lifestyle, metformin and placebos and report that lifestyle plus metformin produced best reductions in the complications associated with diabetes. But as a fellow person I wanna know how I don't  become diabetic at the first place, or pre diabetic or insulin resistant.  

As a researcher this is what I aspire to bring to light. 

Sunday, October 14, 2018

Thoughts provoked by #MeToo

The #MeToo movement is gaining huge momentum in the country. Only today I got to know a little bit more about it. I had heard Emma Watson talk about the movement in her speech some time back, but only now I seem to be seriously gaining knowledge about the ethos of the movement. I read the news, watched YouTube videos to acquaint self about the #MeToo movement. I think enough has already been said about it and talked about it and it is unfortunate that people have to undergo such harrowing experiences in their lives. It is impossible to imagine the trauma one goes through in situations of sexual harassment and objectionable behavior. 

I think assault of women by men, that of men by women, of men by men and women by women, these are all forms of domination, an unquenchable thirst to impose authority over someone and their lives. I think as a society we have a very messed up sense of pleasure and the appropriateness of the actions to achieve it. Stripping someone off their dignity just to suit our own emotionally catalysed desires and uncontrolled state of mind is not only inhuman but highly condemnable and downright unacceptable in a civilised society. However, very few people realise this. 

I always find one thing very very puzzling. How can anyone derive pleasure by doing acts that the other person is not enjoying or if there is no consensus involved? Isn't a close and intimate association with someone at that level of transparency a sacred bond? A friendship that evolves with time, through storms and all tides. And if the person is uncomfortable why would anyone want to make things worse by coercion, by wielding their power or by harping the song of love? For a long time I myself did not understand what all this meant that I am writing about, but now I think I know and understand. Our Bollywood movies depict women as goals to be achieved. There are storylines in which the woman says "No" but even then the guy is persistent/sobs/gets drunk/wails for his love/suffers endlessly and in the end they become one. As a growing up child that's what I liked, enjoyed, never made sense of it, never understood the "NO" that the girl or woman used to say. Consequentially, nothing seemed wrong to me until I read an article in Guardian in 2015 that changed my life, my belief system and my outlook towards such movies and story lines. When I read it, it made a lot of sense to me. I incorporated some lessons from the article in my life. 

Most of the times it is the men who are accused, both prevalence and incidence of sexual assault by men on women is higher than any other gender-combination group. Yet, we must not be caught up in this as the truth alone. As I said before, to me it appears as an individual-to-individual act of domination. Because when I look at it that way, I can look within and ask myself if my conduct is proper and decent in my interactions with people. This helps to focus on improving the situation in personal ways rather than being a participant in the criticism party or the blaming congregation. I also want to state clearly that I support mobilisations and increased sensitisation about these issues in public. 

There are many things we need to learn in life, but the most important of lessons are those of handling rejection, both polite and the violent ones. And all this learning happens experientially, and therefore many a times people go astray on experiencing something that directly rips their hearts apart. Incapable of handling selves during the phase of separation or healing, people often torture others (sometimes for years) screaming about their "love" in all ways possible - continuous calls, senseless and overly sentimental messages at wee hours of the day, making others call the "beloved" thereby practically giving them and own self so much agony and trouble in the name of "true love". I do not think it is love, I think it is action cropping up due to mismanagement of emotions, disrespect towards the right of the other person to live life on their own terms and total loss of sense of self-identity.Ironically, these are the kind of characters that the movie industry promotes, these are the kinds of undisciplined sentiments that the Hindi songs promote and also some poems/shayaris. I do not blame the creators of fine art, I think it is fantastic to have a diversity of ways to channel our deepest and purest of thoughts but a lack of observance of discipline in our conduct under the influence of these channels is never justified. Not in any situation, not on any planet!  

Most crimes, if we pay attention closely, are actually crimes that happen when a person goes out of control in handling his or her self. Of course, it is not easy to handle oneself; like any art, this art is learned, decision by decision, step by step and suffering by suffering. What right anyone has to create unnecessary problems in someone else's life or create emotional cyclones? Getting accused of sexual harassment is a huge disgrace or any harassment for that matter. Some people learn early that anything of that sort has not to be done again or repeated and that there is a need to exercise caution in interactions with people. Many people find it unnecessary to learn and often discard the need of it outrightly. And when their bottle is full upto brim that's when our TV screens flash news of "sensational exposure". 

I can not change anyone or expect others to behave in a certain fashion. I simply can't. In fact today, this morning, I read that what happens is not my responsibility but what I do is my responsibility. And that tells me that the one person I can monitor is myself, my actions, my conduct, my responses, my reactions and my every step in the way. And that seems sufficient. Now I am not a saint, I have made my own share of mistakes, lapse of decisions and I will continue to but I do believe that I am evolving as a person. And so are all we, evolving human beings learning from our mistakes, bad experiences, traumas, dramas and chronic moments of discomforts. It is cleansing to admit mistakes and move ahead as a better person. On the other hand, being on a treadmill to extract pleasure by torturing people can be a very dangerous business to continue. 

I started the article with #MeToo and I have, you might think, come some other way. But I personally feel this is what it is connected to - our personal conducts. No one harms someone else or infiltrates in someone else's private life and territory unless their mind is not at the right place. And the mind usually gets displaced from the right place in emotionally challenging times, in times when their is a seeming void. However I think those are the most powerful moments and heavenly opportunities. The opportunities to recollect self, make it whole, make it better and prepare self for the other experiences and challenges that are to come in life. That's it. Its not easy to practice, I can hear someone of you saying that. Well, the greatest lessons come in the most horrible of situations, if we remember to keep our sanity and wisdom alive. Period. 

So, I think that it is a good business to mind one's own business and do our duties in best ways possible. I also feel sometimes that we have become great achievers and fantastic inventors, yet there is a lot that remains to be learnt in the realm of handling and managing oneself. Because believe it or not, that is the biggest skill; I consider it as the most prized skill of all. It is most difficult and elusive also; it is easier to lose one's self-control rather than to reprimand selves lovingly in times of inner turmoil but that is where the magic lies. 

Anyone can point fingers at others, as is happening now! The question is how many of us can point fingers to ourselves? And then what to do about it. None of us has to be a saint for this, but we can always remember that everyone of us has that element of empathy within, that element which says, 
"To my brother or sister, how can I inflict pain to fulfil those desires that have cropped up due to my uncontrolled mind and undisciplined emotions?". 

Love.



Friday, September 21, 2018

Food is medicine


I have been reading about nutrition and diet a lot lately. In fact, I have always belonged to the ilk of people who think & practice that if one is exercising and eating clean (no junk food, no refined carbohydrates like chocolate pastries, cakes, coke, chips, GARBAGE like this) then there is not much attention to be paid to the knowledge and wisdom of food. Not any more, I am transforming. Well, the process has already started and I am loving it. Now before you jump to label me as a “Vegan” I want to make it clear that I am really not a great proponent of all this labelling farce that happens all over the world in all categories imaginable. (Someone recently told me Section 377 got revoked in India. Well yeah! Good thing! In fact, its a watershed! Too bad that people’s uniqueness is categorized into some abbreviations for ACCEPTANCE. Nightmare!) Anyway, more on that in a later post. 

So yeah, I have been reading a lot on nutrition , the wisdom and healing power in nutrition and diet.The more I am reading, the more my ignorance is coming to surface and the more connected I feel to the natural state of things we ingest to survive. I am reading Dr. T.Colin Campbell, the man behind the China Study, Dr. Caldwell Esselstyn (heart disease can be cured by whole-plant based foods), Dr. Neal Barnard (I am totally inspired by his presentation abilities), Dr. Anthony Lim, Dr. Goldhamer, Dr. Dean Ornish(The God of nutrition wisdom), Dr. Brenda Davis and a lot many others who are actively working to spread the word about the benefits of WHOLE PLANT BASED FOOD (WPBF). The interesting thing is that most of these happen to be physicians, doctors, trained in medical colleges to treat the symptoms of a disease using a drug, like prescribing statins, metformins, lupitor, Xanax, prednisone (there is no end really, isn’t it?). These doctors have become converts courtesy to the results of the meticulous research done by them in the domain of treating chronic diseases. And when they speak, you listen. You listen even when the Coke industry blames lack of exercise for obesity and not the products it produces in trillions to literally kill the people. You listen when the sugar industry blames the Fat industry and the Fat industry blames the sugar industry. A classic case of passing the buck, if you will. 

FOOD IS MEDICINE


When doctors speak, we usually listen (there have been moments when I have not.). But when they say about going the natural way to heal our body, then it would be a disaster if we dismiss their claims as misleading and dreamy. Why? Because they are doctors, they thrive on patients and when they show you the direction of preventive medicine and natural healing mechanisms, they are actually doing us a favor. They are being real doctors. Lowering down of cholesterol, Blood pressure regulation, lowering down of HBA1c (Glycated hemoglobin) is not happening in a utopian world where there are elixir type drugs, but it is happening right in front of us. Although all attempts are being made to hide these highly scientific studies, who has been able to contain the truth anyway? Now I am not asking you to be blind followers, but I am asking you to have an open mind and read the literature out there. To start with, you can google the names I have listen above and that will help you in making your decisions yourself. 

I am also absolutely not disregarding the use of drugs, I respect doctors. They have saved my life multiple times!  If on Friday night you eat some poisoned food and complain of vomiting and nausea in the middle of the night, you got to have a drug to save yourself from dying! Perfectly normal. But there is a deeper issue in sight here. We are facing an EPIDEMIC of obesity, diabetes, cancer, poly-cystic ovarian syndrome (PCOD) , hypertension, insulin resistance and these are all what? Yes, these are lifestyle diseases and yet we are not paying attention to lifestyle that we are following. Dr. Greger, I forgot to mention his name above, another pioneer in this movement of WPBF says clearly, “If it is a disease of lifestyle, it needs to be treated by lifestyle”. Such simply put, indeed! 

But there is one thing that has been hanging on my mind ever since I began reading, more reading about the magic of nature in healing us by annihilating the root cause of the disease. What is that? It’s a question. The question is this, “Why do negative forces win so much and so often in hoodwinking the public by selling the items they claim are healthy?This question has been doing rounds on my mind a lot and that is the reason I wrote this post at the first place. I thought to myself the answer to this question. An answer came, “May be we do not have sufficient information which can help us make choice”, “May be we do not make any attempt to gather that sufficient information which can help us make a better choice” or “May be we have fallen prey to as what Dr. Goldhamer says, ‘a pleasure trap’”.  But I really feel that we as public have made markets for GARBAGE FOODS (I am really sorry, I could not think of a better name) to thrive in market. We have fallen prey to them, be it sugars in sodas, in chocolates , cheese in pizzas, salt in potato chips, PROTIEN in meat and eggs and justify their increased consumption on a daily basis. But see what it is doing to our brains, to our arteries, to our kidneys, to our hearts and to our SOUL? To prevent this infiltration of unhealthy foods in the market around, it is our responsibility to make wiser decisions, to resolve to make our own food. Cooking allows us to connect to food and to really appreciate the hard work of the farmers that has led the food to end up on our plates. How can these negative forces win when we do not create breeding grounds for them? 

Now I know, we crave taste. For a long time I used to think that overweight and obese people are lazy people but now I have transformed in that thought as well. When I see someone working hard in gym to shed those extra stones, I get it, I get that it is extremely hard to maintain an optimal body weight, let alone lose some and be healthy. If there is one thing that is clear on my mind, it is the discovery that fitness is a journey and that it is not an easy one, but an achievable one, a doable one. And guess what? Fitness is an everyday decision, we have to work every day to ensure that we are healthy and fit – no shortcuts sorry! But again, it is a personal decision. No one wants to become fat, sick and nearly die and everyone wants to eat and enjoy food. But we have to ask ourselves a question. 

“Should I compromise my health for the sensation this food will provide my taste buds which will not even last?”

I want every single one of you to be healthy because I love you. We have been given this precious human birth, let us live it responsibly and help our brothers and sisters along the way in their endeavors.

“Money is not important, I want to walk”

(This article was written by the author for Indian Osteogenesis Imperfecta Foundation).
 
Indian Osteogenesis Imperfecta Foundation (IOFI) visited Laasya Shetty and her family as part of their aim to create sensitization about Osteogenesis Imperfecta (OI) or the “brittle bone disease”. Another equally important objective behind the visit was to understand the challenges that the family and the person affected face together. One of the fundamental principles on which IOFI is based is the understanding of the struggles the family as an ecosystem faces and to create awareness among the common public. The intention is not to sympathize but to understand, support and empower.  To this end, the young organization took its first step with the Shetty family. 

Laasya is a cheerful 7 year old girl and the first child to the Shetty couple. She had her first fracture in the 4th month while her body was being oiled.   Like most of the couples whose children are diagnosed (with much difficulty) with OI, her parents had no clue as to what could have led to the bone breakage. After a series of fractures in early childhood, multiple and various doctor visits and a lot of anxiety, it was diagnosed that Laasya had Osteogenesis Imperfecta. Naturally, what ensued after the diagnosis was a sense of disbelief, then a resistance and finally the acceptance. The journey has obviously not been easy for the family but they have decided to become more informed about OI and to create a fulfilling life for their child. In the process, they have experienced a number of challenges, moments of despair but continue to hold their head high. 

In a candid conversation with the Shetty family, IOFI got to know about various issues that a family faces which also echo challenges related to OI in general. The prime and the first concern that often springs up is the difficulty associated with the detection of OI. Given that there are more than 7000 rare diseases in India in addition to the widespread and commonly known health disorders, it can be extremely tough to diagnose them. Increasing instances of rare diseases prevalence and their cumbersome detection signal the importance of developing physicians especially trained to handle the cases related to rare diseases in India. A diagnosis of an unheard disease can be emotionally taxing for the parents of the child therefore, as Saumya, Laasya’s mother, had emphasized that parental stress in such situation is real and calls for suitable counselling services. 

Saumya also told us about the difficulty they faced while enrolling their daughter in the academic schools. Most schools were not willing to accept Laasya after getting to know about her health condition. However, due to the consistent and prolonged efforts of her parents Laasya has finally been enrolled in a school close to her home. She and her mother go to school together, she attends her classes and also writes exams. Saumya and Rajesh (Laasya’s father) have taken major responsibilities to ensure that their child is educated in the best possible way. It is no surprise then that Laasya is the top rank holder in her class. We asked her how does she finds school, she smiles and says that she has friends there. It is often taken for granted what studying in a school can do to young minds until the horror of not getting the opportunity to study strikes upfront. In fact, inclusion, a principle heavily quoted in theory but seldom practiced widely needs more traction. This traction can be built by sensitizing our community collectively about rare diseases, be it parents, teachers, faculties, young children and the like. Through this approach, rather than being seen as a task to be taken care of, children with special needs will be embraced as they are, treated with dignity and nurtured to become empowered individuals. 
Laasya with her parents Rajesh and Saumya.
 
Another concern highlighted by the family was the expensive care that OI entails. Given that the fractures happen recurrently, most commonly used treatment is rodding. Multiple rodding and replacement of rods as the child grows can wreak a financial crisis on the family not equipped to handle the demand imposed due to health care. This brings our attention to the need for financial assistance to families based on their economic sufficiency. It is often not spoken about widely but the rising health care costs and increased privatization of health care in India will to create holes in the pocket of middle-class Indian families. Add to it the cost of managing a rare disease, things can begin to get murkier. 

Amidst all these happenings, Laasya comes across as a well-informed and mature kid. Having seen so much at a young age, she herself makes efforts to make life easier for her parents. In fact, Saumya does not shy away from admitting that, “Laasya has made our lives easier”. Laasya walks with support in her legs and is still learning to walk. We asked her, “What her aim is in life?” Her answer was, “Money is not important, I want to walk”. This profound sentence coming from a 7 year old is a testimony to the fact that this kid has been living life at a very close range, keenly observing all events in her life. Therefore, it is our responsibility as a society to create life easier for them and not more challenging. Schools, public places, institutions of higher learning all need to understand that a child is not defined by their physical structure but by their thought process, dreams, ambitions and aspirations. It would be terrible to block young aspiring minds to come into mainstream and deprive the entire community of the magic that comes along with them. In essence, our infrastructure needs to become flexible and robust to include everyone ending the resistance and a helpless hostility towards anyone different from the mainstream. 

IOIF thanks the Shetty family for giving us the privilege to have a candid conversation with them. They are our crucial team mates in this journey, we highly value them and also extend our support to them. IOIF is actively working towards creating an awareness about OI in the community so that the society, in general, can participate in the nurturing of the young minds to make them empowered adults. In this mission, we cannot overemphasize the support of all of you.


My bones break but they do not break me

Indian Osteogenesis Imperfecta Foundation (IOIF) visited Dhanya Ravi at her Jeevan Bima Nagar home as part of the foundation’s endeavor to ...