12 December 2018
I was diagnosed with NF1 when I was about 2 years-old so I have grown up knowing no different. I am now 17 years old. Luckily, I didn't suffer with a lot of health problems when I was younger. I was hypermobile and had problems with fine motor skills, so it took me longer to use a knife and fork, to tie shoelaces or learn how to use scissors.
I still find some simple things difficult like buttering bread, opening jars, cutting and peeling vegetables. In general, things that mean using both my hands together are challenging and sometimes impossible. I can get quite frustrated with this because I don't like not being able to do everyday things. I also find the unpredictability of NF scary – I don't know what will happen next with it, and whatever does happen next will be my next challenge.
I found some things at school hard. I had extra time for my exams and could use a scribe if I needed to, which was a big help. I had a few good friends, but some people were really unkind to me and that made me really sad because I didn't know why they would be like that.
"“NF is part of me – without it I don't know who I'd be, and I am happy with the person I am”"
Now I'm at college, which has been a very good experience – I'm more grown-up and confident now.
As I became a teenager, things changed quite a lot with my health. I’ve had to have a few surgeries to remove neurofibromas, and after one of them I developed Horner's Syndrome which means I have a droopy eyelid. I don't like my droopy eye at all and so hopefully eyelid lift surgery I have coming up will fix it.
I don't know how I'd cope without the people I have around me… family, friends and medical people and of course my dog! The Neuro Foundation (now Nerve Tumours UK) helped my Mum and Dad a lot when I was younger, so I know I can go to them as well if I need to. I think support is very important.
At this point in life I am quite scared for the future. I don't know what I'm going to do after college or where I'll end up, though I think I would like to work with young children. Life is definitely like a rollercoaster, there are ups and downs and you just have to go along with the ride. I enjoy life, even with NF. It is part of me – without it I don't know who I'd be, and I am happy with the person I am.