Hi, my name is Taylah and I have Neurofibromatosis Type 1. When I was a baby, my mum first noticed lots of marks on my body while she was bathing me. She took me to the doctors who then referred us to a paediatrician. He suggested a trip to the genetic clinic at Westmead Hospital.
We underwent genetic counselling, where they discovered an error on gene 17. I was then diagnosed with NF1. My mum and dad were also tested but they were not carriers of the condition.
At 3 years old, I had my first operation to remove a plexiform neurofibroma that was growing on the back of my neck and was causing discomfort and a lot of headaches.
It grew back a few years later and had to be removed again. This has left me with an unsightly scar.
Starting school was hard. I had learning difficulties that made school and learning even harder. Throughout school I had several psychometric testing's which showed I was not reaching my milestones. I had friends during primary school, but none that I could relate to. I never told anyone about my condition.
When I was 15, I had another plexiform neurofibroma removed from my leg.
Growing up, my life has been full of regular MRIs and PET scans. I never wanted to talk to anyone about it, because it meant I was different and did not fit in.
My mum and dad have always taken care of everything and have made sure I remained educated about my condition.
I have a lot of café-au-lait marks and many lumps over my body. I also suffer from scoliosis, which significantly affects my life. I have chronic back pain and often feel fatigued and tired.
A few years ago, they found a tumour at the base of my brain. We now monitor this with regular MRIs.
I’m now 21 and have made the decision to own my condition by sharing my story. I’m talking to people about my condition and educating them along the way. I’m finding comfort with something I wasn’t pleased about having. Talking to others in a similar situation makes it easier; we are all different but have the same condition."