Raising awareness makes all the difference.Bruno Van Dijck
As a child, Bruno (56) often suffered fractures without any clear cause. He even participated in a research programme on bone problems at UZ Leuven, but osteogenesis imperfecta (OI) was never mentioned. It wasn't until after his thirties that the diagnosis came, shortly after his daughter was born. Skin samples were taken from both of them for further testing. It turned out they shared the same defective gene and were both living with osteogenesis imperfecta, or OI, type 1 mild. This rare hereditary disorder affects connective tissue production, resulting in brittle bones.
Invisible danger
OI is an invisible condition with a major impact, Bruno explains. "It was especially tough as a child and teenager. Kids can be really harsh. You constantly have to explain why you can't do certain things because the risk of breaking something is always there. Your invisible and unfamiliar condition doesn’t exist in their eyes—they don’t believe you. Yet simply slipping or tripping can be disastrous for someone with OI. I still carry the weight of many hurtful comments I heard back then."
Courageous and positive
Proving that OI doesn't hold him back has become part of Bruno's outlook on life: staying courageous and positive. "I see the same mindset in many fellow OI patients—they don’t sit around feeling sorry for themselves. That determination continues into adulthood. In your professional life, you don’t want to waste time either. If an arm isn’t cooperating for a while, that’s no reason not to give 100% at work."
"Every life stage with OI is different. There are still many unanswered questions. What will our future look like? Will we stay mobile, or will that decline with age? Will more limitations arise? That uncertainty weighs heavily. OI isn’t just about being careful and sometimes ending up in a cast—it’s much more than that. That’s why, as chairman of the osteogenesis imperfecta support group (ZOI), I find it important to raise awareness about OI. I firmly believe that awareness can truly make a difference."
ZOI support group
The ZOI support group is an advocacy organisation created by and for people with osteogenesis imperfecta and their families.
