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
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Quantitative MRI Application being developed to help prevent vision loss in NF1 patients
Find out more about the technology being developed and how it can be used to prevent/decline vision loss in NF1 patients
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Nerve Tumours UK Dolphins Family and Friends
Our new fundraising hub has it's first fundraiser! Find out more here:
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Ruby Galloway (NF1) is thrown an incredible sleepover!
Ruby Galloway receives her own incredible sleepover after being nominated by nearly half of Plymouth! Find out more here:
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Jonny’s Story
Jonny has chosen to open up and share his incredibly brave battle with Cancer over the past year, find out more here:
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James on Tour
James Wiggin is taking on the Tour de France on behalf of Nerve Tumours UK – or at least a part of it.
Read MoreNerve Tumours UK Specialist Neurofibromatosis Nurses attend the National NF1 Meeting in Manchester
Have a read what was talked about at this year's National NF1 Meeting in Manchester
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Let’s Go Regional/ Let’s Go Outside
Read about the website that offers new exciting opportunities to help you find a fundraiser/event that is most suited to you
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Meet Harley
Have a read about the amazing 7 year old boy with NF1 and his fundraising family
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Funny Peculiar
Peculiar Productions has chosen to donate all their proceedings to NTUK this year! Find out more:
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