By JULIA SZULEROWSKI
If you’re familiar with the classic movie Forrest Gump, you’ll surely remember the scene where Forrest says “My momma always said you can tell a lot about a person by their shoes – where they’re going, where they’ve been.” For me, my shoes have been everywhere, both as a runner and as an Australian living with Neurofibromatosis (NF).
Like many people, you’ve probably never heard of NF and the families it affects. NF is a genetic condition characterised by the growth of benign tumours called neurofibromas. These tumours can grow anywhere in the body where there are nerve cells, including nerves just under the surface of the skin, as well as nerves deeper within the body, spinal cord or brain. The condition affects 1 in 3,000 Australians and can cause a range of life-limiting complications including blindness, deafness and bone deformities. There is currently no cure.
I remember being in hospital when I was six-years old, having had a cyst removed. My doctors didn’t know it at the time because the disease was unheard of back then, but this was my first symptom of NF. When I was later diagnosed at age 20, I thought the results wouldn’t mean much more than a few lumps, referred to as neurofibromas, and coffee-coloured spots on my skin referred to as ‘café-au-laits’. Over time I have learnt that not only is the condition progressive and unpredictable, but that it has also affected my daughter Jessica in a heartbreaking way I never could have imagined.
The methods people use to cope with illness are many and varied, but for me, I chose running. I’d always been reasonably fit, and it became a way for me to deal with the emotional challenges that NF confronts you with. It helped me stop crying over it, and helped me feel that I was doing something. Jessica, my husband Ralph and I moved to America, and I became involved with a running community there. In 2000, a few months before my 40th birthday, I ran my first marathon – the Dallas White Rock marathon. It was my test for myself, to see if I could I do it, and I was soon hooked, despite my illness.
Soon after, in 2001, I underwent surgery to remove a tumour from my adrenal glands. In that year, I also participated in the San Diego marathon and the Chicago marathon, raising money for the Children’s Tumour Foundation in the US, an organisation similar to the Australian version which is dedicated to providing vital support services to NF sufferers and funding world-class research to help find a cure.