OTHERS

Perfectly Imperfect with Osteogenesis Imperfecta

Rare Disease & Syndrome

Nadeera K. Vasu

My Life In A Nutshell

I was born with a rare genetical disorder called Osteogenesis Imperfecta (OI). It is commonly known as Brittle Bone Disease. There are many types of OI but I have the most severe form of it. When I was born, I had some complications. I was born with multiple fractures throughout my body (some fractures had already healed in my mother’s womb itself). But the X-ray basically showed this whole messed up structure. As if someone had beaten me up into pieces. Besides that, my lungs were also underdeveloped and thus, I had some serious respiratory problems. I was in the ICU, in the incubator, for 22 days, before the doctors told my parents they could take me home to make me feel comfortable and prepare for the worst. However, here I am today, 26 years old and still very much alive. Throughout my life thus far, I’ve had about a few minor fractures and two major ones which I can remember very vividly. When I have an episode of fracture (usually in my legs), I will end up being bedridden and out of school for a few months as recovery takes longer than usual for me. That being said, due to the fact of being extra cautious and careful, the number of fractures I’ve had can be said to be a lot lesser as compared to some of the other OI patients in general. Furthermore, besides fractures, I had to make numerous hospital visits throughout my younger days due to the respiratory issues I had had to endure. A slight cough and cold would eventually get me admitted to the hospital. Getting a place in a regular school wasn’t a walk in the park either. My mom had to fight for my rights to an education and eventually to a school that would accept me. She then spent the next 11 years accompanying me to school every single day.

Navigating Life with Osteogenesis Imperfecta

In school, I didn’t have a particularly smooth ride either. From the aches and pains, I had to endure from the long hours of sitting, to the bullying and isolation from my surrounding peers, to just being alone and lonely most of the time. The one thing that kept me going was my mother’s love & sacrifices. And of course, my strong belief in God & the Bahá’í Faith. Fast forward, by the Grace of God, I graduated from school with exceptionally flying colors and made my way to university, completed my undergraduate degree in Psychology, and now work from home as an HR Executive whilst attempting to allocate some time to give back to society in the form of advocacy and modeling. My only hope is to keep serving and giving back to society as much as I possibly can, for as long as I can. I strongly feel that if you place service as the very core of all that you do, you can’t go wrong! :)

Learn more about me on my blog!

Looking forward to seeing you:

https://thebeautifullyimperfectnut.com! Please do not hesitate to reach out with any questions or comments. Thank you!

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