Cameron, 14, has osteogenesis imperfecta (OI), more commonly known as brittle bone disease which means his bones are more fragile and break easily.
‘I wasn’t diagnosed with brittle bone disease until I was 6 weeks old. Very soon after I was born, my mum noticed one of my wrists bent back on itself but was told it was nothing to worry about. Mum also noticed that the whites of my eyes were very blue – which is actually a common symptom of brittle bone disease – but again was told she shouldn’t worry.
When I was about three weeks old, I was rushed to the doctor because I was screaming and crying and nothing would soothe me. It was put down to colic but my parents were later told I actually had broken ribs.
It was another three weeks until I was diagnosed after a femur fracture. I had screamed all day and couldn’t be comforted. My mum noticed my leg looked deformed. I went to hospital by ambulance and the following day, had full body x-rays which showed healing and healed fractures from before and after birth.
Mum says she felt numb when given the diagnosis and questioned whether she had done anything wrong. We spent four weeks in hospital whilst I was in traction. Because of that, the reality of how life would change didn’t kick in for my parents until we were home and I started suffering more fractures.
I’ve been on bisphosphonates since I was two months old. Unlike others I know whose fractures have reduced while on treatment, I’ve always continued to fracture very frequently and this has increased as I’ve got older. I spend a lot time in hospital but thankfully, don’t have to be admitted too often.
The condition means I have to be really careful about things like PE. Apart from spending more time in hospital, it doesn’t really hold us back. We just adapt and find ways to do things. I don’t let it get in the way and do as much as I can.’
Find out about our research project looking at improving therapy for children with brittle bone disease.