Yellow doesn’t suit me. As a child, I had a pale yellow hand-me-down sundress which, conscious of how awful I looked in it, I wore solely to spite my mother. Vanity having surpassed mischief, I’ve rarely worn yellow since. However, tomorrow I will make an exception to the rule. On 6th May, I wear yellow as part of Wishbone Day, an international day of awareness of brittle bones.
Brittle bones, or osteogenesis imperfecta (OI), is a genetic collagen disorder whose most commonly recognised symptom is that it makes bones particularly fragile and prone to fracture. This, however, is a bit of a simplification. Collagen, a doctor once explained to me, is the ‘scaffolding’ of the body, essential for the structure of all muscles, ligaments and tissues. This means that any part of the OI body can be affected, causing a wide range of conditions varying from chronic dislocation and scoliosis to hearing loss and respiratory problems. Living with OI is not dissimilar to travelling around London during a Tube strike: carriage is slow, unreliable and prone to stopping unexpectedly without reasonable explanation.
So, why is it important that you know this? Because awareness makes a difference.
OI is a very rare condition, affecting approximately 1 in 15,000 people in the UK. This statistic covers a wide range of types and severities, from Type I, which can be so mild it is never diagnosed, to Type II, which is lethal. Some of us can run. Some of us can’t stand at all. The majority of doctors (let alone council staff, social workers and benefits advisers), do not understand OI, and the consequences of this lack of knowledge can be devastating. It is mildly irritating when a new GP, looking through my notes, comments, ‘ooh, osteogenesis imperfecta, eh? So, what’s that?’ It is annoying when A&E doctors fail to spot fractures until weeks after the injury, because my x-rays are difficult to read and the surrounding tissue rarely swells or bruises. It can be incredibly dangerous when a person with OI is given incorrect treatment by doctors who simply do not understand how our unique bodies work.
But I cannot imagine what it must feel like to have your child taken away from you because its bones keep breaking without explanation and nobody has worked out why. This is the tragic reality for many families of OI children, whose injuries are assumed to be evidence of abuse and who are often put up for adoption. Even if OI is later diagnosed, some parents will struggle for years to regain custody of their own children, and to have their names cleared. In some cases, parents will never get their children back at all.
Living with OI is never going to be easy. Just yesterday, my mum (who also has OI but hadn’t broken anything in years,) fell over and smashed her left arm into pieces. She is currently awaiting surgery. It is unclear whether she will be able to use her left hand again. Until scientists come up with a cure for OI, incidents like this are unfortunately not unusual. In the meantime, it’s not just up to the doctors. From teachers, to shop assistants, to the kind strangers who helped my mum yesterday, a little awareness at every level and in every situation would make a huge difference to the lives of those affected by OI. That’s why Wishbone Day isn’t about raising money. It’s about wearing yellow, and celebrating the diversity of the nutty but fabulous OI community, and telling as many people as possible along the way. Please wear yellow tomorrow, and please feel free to share this post (or any other Wishbone Day paraphernalia!) as widely as you can. Because awareness makes a difference.