My story with Osteogenesis Imperfecta
“While our bones may break easily, our spirits never will”
- Archana Ravindra Palahalli
I have Osteogenesis Imperfecta (also known as OI), a condition that causes brittle or fragile bones and possible hearing loss, brittle teeth (Dentenogenesis Imperfecta), short stature, physical deformities. OI was something I was born with, but was not diagnosed until I was three years of age. I experienced my first fracture of my femur bone (thigh) when I was just twenty seven days old when my dear mother was gently massaging my body with oil and getting me ready for a bath.
As a family we were clueless about brittle bones. I am the youngest of three children and my older siblings were as normal as any other healthy children of their age. Initially the repeated fractures were blamed on parental negligence and abuse. However, it was soon realized that a small trip or even a gentle fall that comes with childhood would break my bones. The blanket of guilt and abuse was lifted later when we learned about OI!
OI is a very rare disease caused by mutation of the genes in families, where there is no history of this disease. There is a 50% chances of passing on this disease to the next generation even if one of the parent suffers from OI.
The cause for the mutation is still unknown although there is plenty of research on the way. It affects a small percentage of children. OI can affect people at varying degrees. It is not a deficiency of the calcium. There are 8 different types and I have the less severe type also known as Type I.
Graced by this less severe type has given me the greatest chance of living my life to the fullest extent and being a productive member of the society. In the years following my diagnosis I experienced many repeated fractures of my femur bones. I went through many surgeries at CMC Hospital, Vellore and in hospitals of Bangalore to insert a long steel rod to strengthen my weak femur. I have developed scoliosis in my spine which causes compression in my chest and severe chronic back and hip pains. I am petite in size measuring less than 5 foot tall while my sister is 5.7’ and my brother towers over me at 6.2’!
My family learned quickly how to care for me as I did not need a big fall leading to fractures. I feel very blessed and fortunate today for how my life has turned out to be! There are many infants struck by OI who wake up with broken bones or do not make past their birth! Many of the OI kids lose out on their childhood and school life. I had the best school education and experience which brings a smile on my face while reminiscing. My teachers while being aware of my limitations never made me feel like I could not accomplish. My classmates were ever so understanding that they are my life time friends now. The entire school staff went out of their way to make me feel like I belonged there!
As a child, I missed playing with my friends but it was a small acceptance I had to make while I was counting my blessings. I am proud to have graduated from college then pursued post graduation courses without any visible accommodations for my disorder. I was just another student.
Whenever I felt low or felt OI was gaining control, I would quickly shake myself to let go of those self detrimental thoughts and to rise up and look forward to the next day of a normal life! This attitude supported by my family allowed me to complete an intense course in Montessori methodology and run a school for 16 years. I became more financially independent while working with what I am passionate about and gaining confidence in life.
Although there is currently no cure in sight for OI, my active lifestyle has allowed me to embrace OI and empower myself with the lessons I have learned through my journey. My journey is my pride! I love sharing it. I sincerely hope that it creates a mindset to navigate through challenges and accomplish normalcy to a large extent for anyone who is going through limitations.
I know that I am more than just a person affected by OI. But, it's something that was, and still is a huge part of my life even though I have improved. My journey has surrounded me with the most incredible people who otherwise I would have not crossed paths with. I'm humbled by the support and acceptance that I get on a daily basis. Today I practice yoga and try to stay physically fit by walking.
Awareness brings opportunities for change in many areas including better empathy from the community. The rareness of OI makes it very important to bring this disease into the public’s eye. Those affected in the rural areas are suffering from this disease and parents may not be aware of the precautions they need to take to care for such children. There is also a huge need for financial assistance to provide proper medical care for these innocent sufferers.
I am sharing my personal story to bring support to those who need it the most. Having an open mind and seeing beyond your disability only empowers you to be more than a person with limitations. You conquer life! Seeing a cup as half full has been my inspiration. Dwelling on unproductive thoughts will only create more hurdles to cross.
Talk to people when you're ready to share your story. Learn to laugh about it every once in a while and love yourself for all that you are. Forget the ones who have made you feel inadequate — you are much more than what they think of you as — and work to prove them wrong.
A society is a mixture of people but also when it comes to health conditions. Pity is not being sought; freedom to live an equal opportunity life is what we demand. Be aware that it is real and can affect anyone. While our bones may break easily, our spirits never will. The rare disease community will always exemplify strength and dignity, no matter what the circumstances may be.