June is Scoliosis Awareness Month, and after sharing the inspiring stories of other people living with scoliosis, I’ve decided to share my own journey for Scoliosis Support and Research’s early awareness campaign.
Ironically, my scoliosis couldn’t have been diagnosed any earlier. In 2004, while I was living in South Africa I fell ill with a severe cold. Concerned about the possibility of pneumonia, our family GP referred me for a chest x-ray.
While I didn’t have pneumonia, the x-ray revealed that my spine was twisting into an almost perfectly symmetrical ‘S’ shape. This severe deformity was invisible to the naked eye and, like most people, my family knew very little about scoliosis so if it wasn’t for my cold, the signs may have been missed until it was too late.
Typically, scoliosis is diagnosed between the ages of 10 and 15, and in most cases, including mine, the cause remains unknown. However, early diagnosis opens up more treatment options and provides more time to correct the condition without resorting to invasive surgery.
The ABCD method can detect early signs of scoliosis even at home. I was ticking all four boxes, indicating that my condition wouldn’t improve naturally as I grew and given that both my curves were already well over 20 degrees as a toddler, the only viable treatment option was a spinal brace.
I received my first brace before I turned four; a vibrant orange, farm animal-themed corset of rigid plastic and metal encasing my torso from hip to shoulder. The race was on to see if the brace could keep my curves in check long enough for me to complete my growth.
For nearly a decade, I wore a brace 23 hours a day, seven days a week. There was nothing I despised more than my brace, but the excruciating pain of not wearing it wasn’t a worthy trade-off.
Then in 2013, the doctors called time on my attempt to outlast surgery. My top curve had exceeded 80 degrees and my bottom curve was nearing the late 60s. Most surgeons consider operating around the 40-degree mark.
I can still recall the moment my orthopaedic surgeon announced it was time for surgery; near instant tears of joy and fantasising about crushing all my braces with a tractor.
But then he warned: “You could wake up from the operation paralysed. There’s a chance we could sever the spinal cord in surgery or complications in recovery could unravel everything for no reason and you’ll be back on the operating table.”
I don’t think I fully grasped what the doctors were saying, and I’m profoundly grateful for the blissful ignorance of youth.
Thankfully, my surgery proceeded without a hitch, and I spent my 12th birthday recovering. Relearning how to walk was the most challenging task I’ve ever undertaken, so much so that my mum even permitted me to swear once or twice to cope with it.
Despite the challenges faced by my three-year-old self, I know I’ve emerged stronger. I still have aches and pains, struggle with ill-fitting clothes, and occasionally need assistance.
For those currently wearing a brace, it doesn’t necessarily get easier. The stares, getting trapped in chairs, shredding your favourite shirts, it’s all tough, particularly when you’re young, and it can feel like there’s no light at the end of the tunnel.
But it won’t last forever. One day, you might even forget how daunting stairs used to be.
To parents, using the ABCD method for every child in your life can help pick up scoliosis in the earliest stages, when other treatment options besides surgery are still viable for most.
And if you personally find that clothes never quite fit right, you experience more back pain than your peers or other signs of scoliosis, the charity offers a range of services that can help.
