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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NF1 stem cell research study
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Ava-Lily’s NF1 story
Ava-Lily is thriving at school despite various NF1 related difficulties - read her story
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Westminster Virtual Rare Disease Day 2022 Reception
NTUK joined the annual international event aimed at raising awareness & highlighting the needs of people with rare diseases
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Rare Disease Day 2022
Nerve Tumours UK joins events showcasing Rare Disease Day, hosted by the Genetic Alliance, on 28 February 2022
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Runderpants Winchester 2022
The Runderpants fun run makes a successful return to Winchester
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NF1 Research study with fly model
How can studying the brain of a fruit fly help with understanding of NF1?
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Stuart’s Schwannoma Story Part Two
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Sian & Connor’s story
Sian & Connor describe the invaluable support from NTUK during her pregnancy with baby Reuben
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Anita, aka Fat Lady Slim, is running the London Marathon for NTUK
Anita is fundraising on behalf of niece Sophie & great-niece Lexie who have NF2 by running the London Marathon
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