Sarah’s Story

Sarah's Story

My name is Sarah and I have Neurofibromatosis type 1.

I was diagnosed when I was 16 years old, I have struggled all though my school, college and work life, as I wasn't as quick as some other people to learn new things. This led to everyone bullying me.

I'm now 28 years old and I am still struggling. I have a benign brain tumour on the left side of my brain, and this causes extreme migraines leading to great pain.

I have just recently been diagnosed with a tumour behind my left eye sitting on the optic nerve which is causing my vision to deteriorate. I now only have 60% vision in my left eye and its always blurry. I saw the eye specialist in January 2020 to see if there is any way they can help my vision, so I'm keeping my fingers crossed.

I tend to see the neuro specialist every 6 months, to check if my tumour has grown, I am seeing him in December 2019, so again let’s keep our fingers crossed.

I wish I didn't have it because it’s causing me so many problems; I suffer with my bad back, I have a low immune system, I also have weak bones so am prone too breaking them. I wish there was a cure for nf1.

I currently work full time for the NHS, and I have a brilliant manager who is so understanding and always helps me out