OI WARRIOR & HEROES

Every great warrior must learn to endure and overcome the adversities of life. Similarly every single person with osteogenesis imperfecta is a warrior overcoming various challenges in life.

“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles” – Christopher Reeve

The people whose life’s journey are captured below are the guiding stars, warriors who give us the strength to move ahead. These are people with OI who have broken barriers to stand tall in our society.

Everyone has a story, let me tell you mine. I am Dr Neera Ohri, working as an assistant professor in the department of Dentistry at a medical college. I was born in a small town called Kangra, in Himachal Pradesh. I got my very first fracture at the age of 5 years by simply walking and my doctor was surprised. I got my second fracture flying a kite and the doctor plastered my leg but after a month I fractured myself within the plaster. I was 8 years old when I was operated as I had fractured my femur, while dancing on a Punjabi song. There was definitely something wrong with me which nobody could understand. I still remember my parents taking me to CMC Ludhiana when I was 9 yrs old, where the doctors told me that I have Osteogenesis Imperfecta means IMPERFECT BONES by birth. This disease primarily affects bone but it can affect respiratory system, skin, cardiovascular system, ears, teeth etc.

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Sahana Rajdev, 50, from Kolkata was diagnosed with OI at the age of 13 while undergoing a treatment for trauma to the eye and multiple fractures with very little injury. Currently she has loss of vision in both eyes due to trauma on very fragile ocular tissue. She is also suffering from Partial loss of hearing in both ears due to OI. She has had numerous fractures in both legs along with scoliosis in dorsal and lumbar spine. At present, she is suffering from severe bone, neuro and muscular pain along with occasional breathlessness. Inspite of the challenges as described above, Sahana has had a brilliant academic career all throughout till post graduation in Museum Science, where she secured a first position in Kolkata University. Her other hobbies include painting and craft. A sample of her creation is attached for your reference. She has managed an NGO successfully for more than seventeen years. Unfortunately, she had to take a break to undergo rehabilitation for her vision loss.

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I am Jasmi from Bangalore and I have Osteogenesis Imperfecta (OI) or the Brittle Bone Disease. I am eighteen years old and I would like to share my story with all of you.
I was born normal and my first fracture occurred at the age of 4 years while I was playing like any other normal child of that age. Initially, my parents thought it was just a fracture and got me treated. However, frequent fractures happening for the slightest reasons got them puzzled and they decided to take me to the Indira Gandhi Institute of Child Health (IGICH). By then I was 9 years old and the Pediatric Orthopedic doctors diagnosed me to have Osteogenesis imperfecta.

Once diagnosed, my parents were unaware about the care that I required. The doctors there educated me and my parents about the special care needed and of course, since then it has been a life full of restrictions.

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My name is Nunna Aravind Kumar, S/o Mr.Samba Siva Rao, native of Machilipatnam town, Krishna district in Andhra Pradesh. I was born on 3rd of January 1990. It was when I reached the age of 5 years that I started to break my bones even with minimum impact. My parents thought something thing was wrong with me and they took me to Nizam Institute Of Medical Science in Hyderabad. I was diagnosed to have Osteogeneis imperfecta. I had inherited this condition from my mother who has OI type-1. Since my parents are from small town, and there were no qualified doctors back in those days to diagnose her condition and it went un-noticed till she turned 30 and everyone assumed that she was just fragile.

My initial years was a struggle. When I started going to school, children of my age started bullying and started making fun of me due to my bad posture. Also there were issues within the family too and i was an easy target left to defend myself.

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Sirisha  :Sirisha was born in Chittoor town district in Andhra Pradesh in the year 1988. The medical staff was not aware of OI and handled her as they would handle any infant born without OI. During birth she experienced multiple fractures in several parts of her body. However, a recognition of underlying cause could not be made and Sirisha was continuously writhing in pain. Observing these incidents, the doctor advised to take the baby to an orthopaedic doctor. Within 30 minutes, as the orthopedic doctor checked her, Sirisha was diagnosed with Osteogenesis Imperfecta. With the hope to find a cure for their daughter, Sirisha’s parents took her to several hospitals like NIMS Hyderabad, Vijayawada orthopaedic center and AIIMS. The diagnosis, however remained the same and was confirmed by all the doctors. By this time the family had understood that there was no cure for the condition.

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Dhanya  :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.

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Lasya:Lasya 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.

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