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.
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#BackThe1in6
Read the My Neuro Survey findings from the Neurological Alliance & sign the petition for a Neuro Taskforce to deliver change
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Austin’s NF1 story
Austin's mother, Katie, describes how local biker clubs have helped to support Austin since his NF1 diagnosis
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NTUK Comedy Circuit 2022
Three more dates for your diary: Manchester 14/6, Newcastle 12/7, Glasgow 14/7. Altogether now: "Happy birthday NTUK!"
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RideLondon-Essex 2022
Thank you to our RideLondon-Essex 2022 cyclists! Click here for some great photos from the day
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Pat’s Triathlon Challenge
Pat is taking on a 3 day triathlon style challenge to raise awareness & funds for Neurofibromatosis research & support
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World Neurofibromatosis Type 2 Day and 40 Years of NTUK
A celebration and call out to get involved, ask questions and join the community with Emily Owen
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Shine A Light 2022 Success!
The Shine A Light 2022 campaign had over 200 buildings around the UK & the Republic of Ireland lit up in blue!
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NF1 & our Xander
Xander's parents have a unique fundraiser raffle, especially for LITRPG fans, with the aim of raising awareness of NF
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RideLondon FreeCycle Sunday 29th May
Join Nerve Tumours UK on the official RideLondon Day 29th May 2022
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