Sarah’s Journey
22 February 2021
Hi, my name is Sarah, I am a frontline care worker and I was first diagnosed with Neurofibromatosis Type 1 at the age of 16. After a few years, when I was in my late 20s, they found some benign tumours on my brain, sitting along a nerve, this causes me to have regular crippling migraines. I have another benign tumour behind my left eye, which has reduced my vision to 60 percent. Unfortunately, due to the location of the tumours my neurologist says that they cannot be removed as it is too dangerous. I see my neurologist every 3 months to have my tumours checked as, even though they are not cancerous they are continuing to grow, and I have had multiple hospital admissions due to seizures caused by my tumours. The curvature of my spine is also affected by my Neurofibromatosis which causes me trouble.
Despite everything I try to focus on the positives. I'm a huge football fan and have a season ticket for Aston Villa. As well as supporting my team, I love to play football & rugby. I also love the Ultimate Fighting Championship (UFC) and I do Mixed-Martial Arts (MMA) regularly. Lockdown has been really hard, especially on my mental health but I'm getting there. My new interest is that I've learned to draw, so that's a positive from lockdown. I’m 30 year’s old now and still battling, this is my story.
Filter News

Newcastle Comedy Night
The Stand Comedy Club in Newcastle held a great night of fun and laughter
Read More
Nerve Tumours UK Lottery
Read how the NTUK Lottery helps make a difference to the NF Community
Read More
Manchester Comedy Night
Manchester's Frog & Bucket Comedy Club hosted the 2nd date on the NTUK 2022 comedy circuit
Read More
Call for evidence for new 10-year plan to improve mental health
The government has committed to develop a new cross-government, 10-year plan for mental health and wellbeing
Read More
Medical Photography of dermatological conditions - research
Research study: Patient perceptions of medical photography of dermatological conditions
Read More
#BackThe1in6
Read the My Neuro Survey findings from the Neurological Alliance & sign the petition for a Neuro Taskforce to deliver change
Read More
Austin’s NF1 story
Austin's mother, Katie, describes how local biker clubs have helped to support Austin since his NF1 diagnosis
Read More
NTUK Comedy Circuit 2022
Three more dates for your diary: Manchester 14/6, Newcastle 12/7, Glasgow 14/7. Altogether now: "Happy birthday NTUK!"
Read More
RideLondon-Essex 2022
Thank you to our RideLondon-Essex 2022 cyclists! Click here for some great photos from the day
Read More