My name is Leah and I have infantile thoracic scoliosis. I was diagnosed at 10 months old, I had a plaster cast brace and neck support, however, my curve was progressing too quickly and so I two spinal surgeries at age 5. During the surgery, bone was placed between the vertebrae of my spine to try and prevent my curve from progressing further, unfortunately this did not work as hoped.
I have kyphosis and my spine is S shaped with two curves, one measuring at around 108 degrees. I have been seen by a number of consultants and have had enough X-rays and MRIs to fill a library, unfortunately the risk of paralysis if further surgery were tried is too high. The result of the surgery is also thought to maybe reduce the lump on my back by half an inch – I think you will agree the benefits do not outweigh the risks!
My scoliosis can be painful and has reduced my body height, lung capacity and upper body strength. Having said this, I lead a “normal” life, I work full time, drive a manual car and I enjoy everyday things and have even travelled the world alone. I try to manage my pain by keeping active, going to the gym, walking and have recently started Pilates. I also have reflexology around every 5 weeks which has helped my pain dramatically.
For me one of the biggest challenges can be the public and the way scoliosis is portrayed in the media, such as the villain having scoliosis or a curved spine being the blunt end of a joke. I look physically different and receive comments and looks from others on a daily basis. Therefore, this year I have joined a local scoliosis support group and am aiming try to promote awareness of scoliosis and reduce the stigma and discrimination of the condition. I have shared my story with my works newsletter and created a video about my scoliosis. As my scoliosis is very severe, I want to show people that this diagnosis shouldn’t hold them back and that they can lead a great life! Every day I am very grateful that I have the ability to walk, talk, hear and see, I am grateful to be able to work and support myself in my own home. I want people to be proud and empowered by their scars from their surgery and realise that scars are a normal part of life and that having a scar or scoliosis should not stop them from being who they are and doing what they want to do! Be you, be proud, flaunt your quirks, scars and imperfect perfections!