Chloe's Story

My name is Chloe. I was diagnosed with NF1 when I was seven – just over ten years ago. It was passed on from my birth dad. My mum knew there was a chance I could have neurofibromatosis and so took me to the doctors when I was a few months old but since I wasn’t showing that many signs of the condition, I didn’t get diagnosed until much later.

I don’t have any visible signs except a plexiform neurofibroma on my right arm. My mum was told that I would have trouble with school, but I didn’t, I’ve always been academic. The only real issue I had was with maths, I never understood it and still struggle.

I went to a mainstream secondary school and had no issues. I passed all my GCSEs, including getting one A grade. I then went on to study A-Levels. I struggled a little with the essay writing and getting it up to the right standard but that didn’t hold me back and I finished my A-levels with two grade A's and a grade C.

My plexiform has been a talking point with a couple of patients on clinical placement and I don’t mind talking to some of them about it. I want to help spread awareness of the condition so that it becomes more well known and better understood so there aren’t as many people thinking it’s contagious which is something I have come across often. This was mainly in secondary school where there were also rumours circulating that I had ringworm or AIDs and no-one would sit next to me because they thought I’d give it to them.

It got to me at first but I learnt to rise above it!

Recently, I went to see some specialists and a plastic surgeon in Manchester and they informed that later this year, I will be able to get the plexiform neurofibroma on my arm debulked and the surgeon predicts he will be able to remove all of the plexiform neurofibroma on my hip.