Sarah’s Story
13 November 2019
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
– Sarah"I currently work full time for the NHS, and I have a brilliant manager who is so understanding and always helps me out"
Filter News
_3_800_600_s_c1.jpg)
Running for a Cure: Laura and Gonzalo Take on Half Marathons for NF1
Laura and Gonzalo; founders of CureAge Therapeutics, lace up for NF awareness.
Read More
Diet, fatigue and NF1
Take part in this research study which will explore the connection between diet, fatigue and NF1 in children and young adults
Read More
Our Ambassadors
NTUK is delighted to introduce you to our three new ambassadors, Emily Owen, Georgia Baum & Amit Ghose.
Read More
London Marathon 2025 Team NTUK
Congratulations and a big THANK YOU to Team NTUK for their superb efforts
Read MoreIan’s Story
Read Ian's story and why he's going the extra mile for NF awareness and his daughter Emily
Read More
London Marathon 2025
Meet our 2025 London Marathon fundraisers—each running to support those affected by NF. Read & share their stories.
Read More
Nerve Tumours UK Virtual Coffee Mornings
Chat and connect in our newly announced NTUK Virtual Coffee Mornings
Read More_800_600_s_c1.png)
Understanding the Impact of Nerve Tumours UK: Insights from Our Latest Survey
Take a look at all the insights from our latest community surveys
Read More_800_600_s_c1.jpg)
Rare Disease Day 2025
All the highlights, updates and impact from NTUK's involvement in Rare Disease Day 2025
Read More