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What is Osteogenesis Imperfecta?

Osteogenesis Imperfecta (OI) is a genetic disorder that affects around 1 in 20,000 people. This disorder results in individuals having brittle bones that break easily. It is a chronic condition that cannot be cured. As it is with many disorders of this kind, the greatest hindrances people with the disorder face are caused by lack of awareness and treatment options. Individuals with OI are usually fragile and are prone to regular significant injury. Treatment helps in improving the condition over time. Knowing all of this, one would be forgiven to think that a person with OI would be very fragile. That is until one met Ms. Archana Ravindra. 

Who is Archana?

Archana is the Founder of IOIF (Indian Osteogenesis Imperfecta Foundation) and a perfect example that shows that human spirit and resilience can overcome even the direst of circumstances. Archana was born with Mild to Moderate OI. In the beginning, her parents were mystified by what was happening to her. Her bones would break easily, and she had already suffered multiple fractures at a very young age. Even the doctors where stumped as to why this was happening. “ That was when my grandfather, who was an advocate nudged the doctors to think in a different direction about my situation”, Archana narrates. That was when her condition was diagnose.

The Role of Family 

Many people with OI are unable to lead normal lives. That is where the support of families becomes important. “My parents always ensured I had a normal childhood. My mother would drop me to school, and come to visit me every hour to see how I was doing. She would then go back and do the household chores. Even my grandfather was always supportive. He put out my story in a local paper which helped other people with the same condition come forward and gave my family also ideas about how to deal with it. My parents always ensured I got the best possible medical care,” reminisces Archana. 

OI is a disorder which is hard to diagnose in our country and the treatment options are also limited. This is where the role of the family becomes critical. They have to be proactive to identify and help their children. 

Leading a Normal Life and Running a Montessori

OI makes it very difficult for individuals to lead a normal life. Regular daily activities could cause significant injuries. However, Archana has been a role model who shows that a disorder does not change who you are and cannot hold you back. 

Recently, Shri Venkatesh Murthy, the founder of YFS, had remarked in an article that Seva as a way of life was an important thing to think about and follow. Archana echoed the same sentiments as she says “ I finished my studies and was always passionate about the concept of Montessori. My intent to run a Montessori was to serve children, and I did that for around 17 years.” In fact, Archana has managed her condition so well that no one at the Montessori ever figured out that she was afflicted by a serious disorder. 


                                                 

Leading a Normal Life and Running a Montessori

OI makes it very difficult for individuals to lead a normal life. Regular daily activities could cause significant injuries. However, Archana has been a role model who shows that a disorder does not change who you are and cannot hold you back. 

Recently, Shri Venkatesh Murthy, the founder of YFS, had remarked in an article that Seva as a way of life was an important thing to think about and follow. Archana echoed the same sentiments as she says “ I finished my studies and was always passionate about the concept of Montessori. My intent to run a Montessori was to serve children, and I did that for around 17 years.” In fact, Archana has managed her condition so well that no one at the Montessori ever figured out that she was afflicted by a serious disorder. 

The Role of YFS in the Origins of IOIF

 “I have known YFS for around 12-13 years. The founder of YFS, Venkatesh Murthy’s son was my student in the Montessori. It was an enjoyable experience to teach Venkatesh and Parimala Murthy’s son and to know them over the years. They were living in USA formerly, but they gave that up to come and serve the Indian Society. They actively served society with complete dedication. All these things impressed me so much. I used to support in some of YFS’ projects like sponsor a child. I used to be informed about their various activities,” Archana narrates.

Even after their son passed out, Archana still kept in touch with YFS. She would attend all of YFS’ s events.  Archana then came up with this thought of starting an organization for OI community. There were certain things which strongly made her feel for other individuals afflicted with OI. She describes one incident, “There was this one child in BTM Layout who lived right opposite a big school. But, because the child had OI the school did not admit her. I felt so sad when I met her, as she was being denied basic education just because of her condition. All the school needed to do was minor modifications, which would then help the child have an enjoyable childhood.”

The very next day Archana met Shri Venkatesh Murthy, and asked if YFS had volunteers who could go and help such children. That was when she learnt about the Change Agent Fellowship. Archana enrolled as a Change Agent fellow and got into the fellowship. She was then able to leverage the vast resources of YFS to bring about significant change in the lives of children afflicted with OI.

IOIF, the team and the Journey till Today

IOIF has done some great work. Archana is very modest as she claims “ As far as numbers go, we have not done a lot,”. However, social impact is not measured by numbers is it? Even one life changed is a change of huge magnitude. We try to extend help to people who really need it. We have our own procedures that ensure people who really need help get it. 

“ I chose to serve the OI community because of the challenges that I personally experienced,” reflects Archana on her journey today. The team conducts a detailed study of each case. The team also includes a medical team that takes care of the medical side of each case. It is a team effort. Shri Venkatesh Murthy was the mentor for this team and he was involved in every meeting, and ensured everything proceeded smoothly. 

The beginnings were confusing as Archana had a lot of questions, being new to the arena of Social Service. She lauds the effort of Dr Prashant Enna, a trustee of the foundation who would discuss with Archana about areas of support that could be offered. There were people who wanted physiotherapy, families who couldn’t afford surgery for the children, and other such scenarios. “ When I ran the Montessori, I was hesitant to even ask for fees, but once I began the foundation I had to go and openly ask people to contribute to fundraisers as someone else’s future was at stake.” She recalls. 

IOIF also, for the first time in Bangalore, raised awareness about OI in Lalbagh on May 6th 2019. May 6th is International OI Awareness Day. In Bangalore there is very little awareness about OI and we raised awareness with ORDI , the umbrella organization for rare diseases. Together they had a big event with over 200 volunteers participating in raising awareness. IOIF also facilitated with wheelchair donations for increased independence in people with OI. 

Archana describes her joy, “ I derive a sense of fulfilment from my work today. When we help someone, their families keep in touch, share photos, videos regularly. It gives a great sense of joy to see someone’s life being transformed.”

Today, Archana is leading an important movement to generate awareness about a serious condition. She is a beacon of hope for others suffering from OI who can take inspiration from the fact that despite all that was against her, Archana has managed to rise up tall and bring about change in this wide world










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