Story of Archana – Indian Osteogenisis Imperfecta Foundation (IOIF)
Osteogenesis Imperfecta (OI) is a rare disease caused by gene mutation passed on to the child genetically as the name indicates. The main symptom of OI is brittle bones which causes repeated fractures even while doing ‘normal’ daily things. The degree of OI affecting an individual varies. It can be mild to severe which is classified by different ‘Types’
I am Archana Ravindra born with moderate-mild form of OI. I suffered my first fracture as an infant at 27 days old when my dear mother was massaging my body with oil and getting me ready for a traditional bath. To date, I have endured 18+ fractures and many surgeries to strengthen my femur bones.
The number of occurrences of fractures reduced in my teen years. This allowed me to have a more normal life like my siblings with of course a few altercations. I attended regular school where the teachers and other staff members made many adjustments to ensure I have a normal school life. I could not participate in many physical activities at school or otherwise which was expected of a child. But, I do not regret those much. I have been very fortunate in many ways. I feel life has given me many more ‘other’ opportunities to showcase my passion and talents and to be a valued member of my community.
I attended Mount Carmel College and graduated with my many friends. I continued to study and train in the Montessori methods and ran a school for 17 years. This experience let me understand my limitations and challenges and gave me opportunities to develop many skills to enhance my life. I realized that everyone has challenges and it is our experiences that help us learn and overcome them! I truly enjoyed my time at the school. I feel amazingly positive when my past students recognize me and acknowledge their success to my small contribution in their formative years.
To keep myself physically fit and manage my OI I do walking and have been practising gentle yoga since the last four years. Yoga has helped me to gain body flexibility, balance and manage pain. In 2018 Indian Osteogenisis Imperfecta Foundation (IOIF) was born after my successful journey as a Director of my school. With this in place; I decided to use my experience as an OI person to educate and support other OI individuals. Being a Rare Disease, it is difficult to find people with a similar disorder and connect. Some of the people do not follow up after being diagnosed , and some give up in the middle. Bringing up a child with a rare condition is very difficult , and it is necessary that both the person as well the parents understand the situation on hand and work with positive mindsets . Though there is no cure , it is imperative that the persons stay connected , and share information and news related to the medical developments in this field.
Having gone through a situation for so many years , I am very keen on educating and motivating the persons and their parents about the medical condition , the importance of acceptance, and how to face life more positively.
The organization currently with the support of trustees has had many successful events bringing light of the challenges of many rare diseases including OI. We also have successfully raised funds to help young children go through correctional surgeries so they can lead a better quality life. As an organization, we were the first ones to highlight and celebrate ‘Wishbone Day’ in Bangalore. Since our event, we have noticed more awareness and empathy among the general public. We are extremely proud of our contribution and hope that we celebrate many more events to educate the public so there are some rapid and required changes for a better quality of life.
I strongly believe in an Inclusive Society , where no one is left behind. When one is Challenged , education becomes the first big hurdle. If this is addressed , the person begins moving in the society, and slowly begins to accept his or her challenges , and learns to keep moving ahead. As a Society , it is our duty to give all the Challenged equal opportunities to perform and excel.
I wish the readers the very best and request them to contact our organization in case they know of anyone with OI needing support.
Indian Osteogenisis Imperfecta Foundation (IOIF)
