Sally’s NF1 story

I was 15 and was having a general health check at school. The lovely nurse noticed I had a few cafe au lait birthmarks.

One big one on my chest. She wanted to refer me to a dermatologist. I went home and told my parents. We weren’t worried but thought it bit strange.

Within time, my mum and I went to our local hospital in Hertfordshire. I saw a doctor, who examined me and very coldly, told me I had Neurofibromatosis. We were not told much information and we left in tears not knowing what the future held. I had a few lumps and bumps at this stage, so at least it explained this.

My mum got on the case. This was before the internet was a big thing but she tracked down that there was a clinic at Guys Hospital.

Eventually I went to see Professor Ferner and a support worker who specialised in helping people with NF. This was the most important turning point in my diagnosis. I finally felt I had answers and much more help for the future. They were incredible and so welcoming and kind. They have been there every step of the way, for all the treatment I have since received. It’s like another family to me, as I couldn’t have got through it all without the professionals at Guys and St Thomas Hospital. 

I have gone through a lot with my NF, having over 40 tumours removed, treatment for my hyper mobility and nerve pain and my mental health issues but I have always felt determined to not let it stop me from living my life to the fullest.

Meeting people with NF has always been amazing and sharing our stories. I recently met Adam Pearson and I was shaking as he is one of my heroes.

I have been successful in achieving my A-levels, a degree from Brighton University and a career in the financial sector. Meeting my husband was the turning point in being truly happy.