Osteogenesis Imperfecta: 100-plus fractures in 31 yrs: The disease that kept breaking his bones but never his spirit

Time of India

a day ago

Parikshit Shah
I was born with multiple fractures in all four limbs, and within 24 hours, 80% of my body was plastered up. X-rays and other tests confirmed that I had Osteogenesis Imperfecta (OI), commonly called brittle bone disease.
Tired of too many ads? go ad free now
This was 1993, and my parents had neither the money nor the knowledge to explore advanced medical treatment. So, most of my childhood was spent in plaster casts.
Every year, I would have 3-5 fractures, each needing a plaster for at least 45 days — some as long as 90. I wrote many exams with half my body in plaster (laughs). We lived in Jamnagar, Gujarat, and every time I fractured a bone, my mother would take me by train to Mumbai, where my doctor was, get the plaster done, and bring me back the same way. Imagine that with my fragile condition — the journey itself often gave me multiple new fractures!
When I was around five or six, doctors started thinking of surgery.
I was given medicines and a battery of tests were done, from X-rays to DEXA scans (to check my bone density), till I was 10. But the results weren't favourable, so the operations were cancelled. In 2003, my father passed away and we moved to my maternal uncle's house in Panvel, Navi Mumbai. Enrolling in KES V K High School in Panvel changed my life in more ways than one.
The teachers were supportive, and the principal ensured I knew my rights as a specially-abled student.
They brought my story to the world in 2009 through a TOI report during my SSC exams.
As for medical treatment, the painkillers, vitamin D and calcium medication continued till 2014, with intermittent X-rays and DEXA scans, each result not too different from the earlier one. It was only in 2024, when I went to a new doctor, that I got my genetic profiling done for the first time. And in July this year, I got my first bisphosphonate infusion (drug to strengthen bones and cut fracture risks).
Tired of too many ads? go ad free now
If I had received it as a child, surgery would have probably been possible.
But now, it will make sure my disease doesn't get worse.
Every time I got a fracture, my mother would take me by train from Jamnagar to Mumbai and back for the plaster. Imagine that with my fragile physical condition! The journey itself gave me many new fractures
Parikshit Shah
I got my first major social media gig during the 2014 Maharashtra assembly polls. After freelance gigs and a partnered venture, I started my own solo company called Pluralis Digital last year, which specialises in social media management and marketing.
My disease limits my outdoor exposure and access to any place that isn't wheelchair friendly.
Till 2024, no one except my mother and cousin could lift me, as the slightest mishandling could cause bone fractures. Now, I've started hiring caregivers whenever I have to go out. In my 31 years, I can count the number of social functions I have attended on my fingertips. Public transport, except the railway, is useless for me.
I miss exploring the outside world, meeting more people, attending live artist shows…the list goes on.
But everywhere I have gone — whether for award functions or to deliver speeches — people have always been supportive.
I would urge those living with brittle bone disease to know about their body — the complications, possibilities and what modern medical science has to offer. And please, prioritise education and career. Don't limit yourself with an inferiority complex.
As told to Srirupa Ray