Written by Hannah Moffatt
I count myself one of the lucky ones. I may have NF, but that does not stop me from aiming high or achieving what I want out of life"
I was first diagnosed at 16 while preparing for my Debutante Ball. At the time, I had two growths on my back and one on my shoulder that led to a life-changing NF1 diagnosis. With no family history, it came as a complete shock. It also raised many questions, but yielded few answers.
Why was this happening to me? Would I still be able to do all of the things I wanted to do?
It was hard to cope, having never heard of NF nor did I understand what this would mean for me. I can’t imagine what it was like for my parents, being their only child.
I was initially hesitant to talk about it for fear of being treated differently, but in time I found that sharing my story and using it as a vehicle to raise awareness and funds for the Children's Tumour Foundation was both a rewarding and healing process.
No one should have to go through this alone. My parents have been a great support one I could not live without. I have also been lucky to make an extremely close friend within the NF community and we are able to share our problems and be a support for one another.
The scariest part is the unpredictability of NF; it is daunting not knowing how and when my condition may progress, but I am determined to move forward with a positive and proactive approach to life.
I have had several operations to remove neurofibromas, with two major operations to have the removal of a plexiform neurofibromas from my mouth and part removal of a tumour in my finger.
I have a tumour on the base of my spine, situated near my kidney and an optic glioma behind my right eye. I also have other NF symptoms such as café-au-lait spots, lisch nodules, and I need to be monitored for scoliosis. I also battle vasovagal syncope, which causes low blood pressure leading to blackouts and a loss of consciousness.
Now at age 30, one of my biggest emotional battles is the tumours that are appearing on my face and what my life may bring.
I completed a double degree in Law and Business (Accounting) at Victoria University and completed my Graduate Diploma in Practical Legal Training.
I was admitted to the Supreme Court of Victoria in July 2015 and am now practicing as a Solicitor. I am also involved with the Victorian Committee for the Children’s Tumour Foundation of Australia.
I was also always worried about meeting someone and having that person accept me and my condition. I need not have worried. I finally found that special someone who accepts everything that I am and we were married on 8 December 2018.
I know I will probably always have ongoing issues arising from my NF, but I try not to let them stop me from achieving what I want out of life.
It feels great to see what I have accomplished considering NF typically comes with learning difficulties. It can be challenging, but I try my hardest not to give up, even though sometimes I want to.
The support of my parents, husband, family and friends helps me get through. They believe in me and know I can achieve what I want to no matter what condition I have.
I do count myself as one of the lucky ones. I might have NF, but I try not to let that stop me from aiming high and making the most out of life and every every day.