IOIF is happy to endorse and support the OIFE initiate -The IMPACT SURVEY
The IMPACT Survey is an international research project exploring the real impact OI has on people’s lives. The IMPACT Survey is aimed at capturing and quantifying the true challenges of life with OI to enable better diagnosis, treatment and care, and to support availability of potential future treatments for OI.
“There are no barriers in living life the way you want to, it is your choice, all down to the restrictions you put on yourself”
Dr. Neera Ohri
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.
I was always a bright student. I was going to appear in a scholarship exam with other students. As I was walking, the road was bumpy, I took a jump like other students and broke one hip and the other femur. The hip was so badly broken that it was never repaired even after multiple surgeries and I was bed ridden after that. My friends used to give me their notebooks to cover syllabus, the process continued for a few months but then they stopped coming as I was not able to walk for four years. I used to read all the subjects myself, I was my own teacher except for mathematics for which my parents used to struggle till end to hire a tutor at home. My cousins used to carry me to appear for exams.
Because of disuse, my bones were losing strength. I was given a walker and iron leg braces to walk but those boots were so heavy for me that I fractured in those braces too. One of the doctors said she cannot ever walk. Then, we met a person who was expert in traditional bone setting. He rotated my bone without pain and after two years of extensive physiotherapy, I started walking all over again. During physiotherapy, I fractured three times but by that time my mother had learnt the art of simple fracture reduction. We did not have orthopedicians and physiotherapists in my town during that time. So, I was trying different exercises, when my mother was sleeping and broke on bed also (stress fracture). I did not want to stop for the fear of fractures, and finally after years of practice, one day I started walking without walkers and holding hands.
I cleared my premedical test in the very first attempt and bagged a seat in dental school. My parents were scared to send me away from home but they never stopped me from achieving my dreams. My seniors questioned me how I was going to do dentistry and to go for medical side as dentistry demands physical work. But as we all know, to be the best you must be able to handle the worst. I proved them all wrong and I cleared dentistry in flying colors. My teachers always appreciated my clinical work. While I was preparing for masters in Dental surgery, I broke one leg and arm together, even then I cleared All India Entrance Exam and got a seat in the reputed government Dental College and research Institute in Bangalore. At the same time I had cleared commission exam for government jobs but I chose studies over job. My parents were scared to send me out of state but I had come a long way and nothing could stop me. I started flying alone, managed my masters far away from my family. My guide was scared after knowing about my condition. She told me to work on a chair next to her, so that she could protect me. Within a month she understood my enthusiasm and my zeal to learn. She gave me a thesis in which I had to work on patients not within my department but instead I had to go and get thalassemia kids from the pediatrics department of Bangalore medical college.
I had lax joints and pain in malunited fracture sites during post-graduation. I had one serious fracture and major surgery two months before my post-graduation final exams. One of the orthopedicians saw my X-rays and told me that if I had only seen these x-rays and not you, I would have said that this patient does not walk. I never gave up on myself and my will power led to miracles. Over the years, my pain threshold has become so high that I do not feel pain even if I get a fracture. I am the very first dentist to do Masters in Dental Surgery (Oral Cancer Diagnostician) in differently abled category in my state.
I had a very fulfilling childhood but in retrospect, I know I felt quite Isolated and excluded from normal life. So, my goal was not to fight against but to live a good life with OI. I think my adult life is not quite affected by OI. I have a profession which I love, I learnt driving at the age of 34 and I have travelled alone to Malaysia, Dubai and Phuket. My plan is to travel as much as possible and try out new things before my body gives up. In India, girls generally are not allowed to do anything alone, forget travelling abroad alone for a girl having OI. The problem with conservative Indian society is that they do not think out of the box. Their definition of normal is fixed, sometimes people stare at me as I am too short to fit in their criteria of normal. There are no barriers in living life the way you want to, it is your choice, all down to the restrictions you put on yourself. Just find your own way to achieve anything on the planet as sky is the limit.
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.
Sahana is a self-motivated person and her vision loss or OI has never been an impediment through out to achieve something. At an early age of 9, she left the comfort of her home and went to New Delhi, just to study in a better school. She came out with flying colors and ultimately completed her post graduation, inspite of her impediments. After her post graduation, She found an NGO named “ Sarvoday”. The objective of this organization was to provide economic rehabilitation for Disabled. Sahana got immersed herself very deeply in to the activity of the organization and sacrificed her career opportunities completely.
IOIF salutes her courage and commitment despite all her struggles. She is an example of a true unbreakable spirit!!!