This is my NF Journey. I was diagnosed with Neurofibromatosis type 1 at birth, as my biological mother had it. Due to circumstances of the day, 1973, I was placed into foster care as my biological mother was unable to look after me. Throughout my toddler years, I suffered seizures as well as delayed development. I was able to outgrow my seizures. The only other one I had was when I was 12, and was put down to hormonal changes at puberty. I remember having cat scans, PEGs and EEGs of my brain. My specialist was Graham Wise at Prince of Wales Children’s hospital at Randwick.
Throughout my adult life I have noticed an increase in neurofibromas. I had one hard in nature removed from my right scalp in 2011 and one soft in nature from my left face in 2016. Throughout my childhood and into adulthood it has been difficult to get people to understand about neurofibromatosis, and how it affects me. The tumours, the problems I have with hand-eye co-ordination, kicking a football or hitting a tennis or cricket ball. Keeping up with the pace, accuracy and efficiency of fellow employees. While I had support health wise while I was younger, living primarily in the country there was no peer support. In adulthood it’s hard to know where to go to for health advice from a NF expert. I have been told that I was expected to be in a wheelchair by age 5, and have a life expectancy of 20. So parents, if you hear what could be worse case scenario, stay positive because that doesn’t have to be the outcome. I’m proof of that.
I know I have been lucky health wise, but it would have been nice to have a bit of support in other areas. This is why I want more awareness of neurofibromatosis. Social media has brought me into contact with the NF community. What adults with neurofibromatosis missed out on, children of today can have. They can transition into adulthood knowing the support is there for them.