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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One More Nurse Appeal Press Release
Have a read of our #OneMoreNurse appeal press release here:
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Recent Research from DR Shruti Garg
Find out more about some of the recent research carried out by DR Shruti Garag
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Advisory group of parents needed to help shape future research
Maia Thornton is a PhD student looking for an advisory group of parents who's child has an appearance altering condition
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Olivia’s Story
Olivia is an enthusiastic and determined young girl. Have a read of her inspiring story here!
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The Big Lottery Fund pays for 2 Patient Info Days
Nerve Tumours UK receives Lottery funding
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New research into non-discrimination law
Durham University is looking for participants who look different due to their health complications. such as NF.
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Letter from our new Chair
A letter detailing the vision of our new chair, and the future of the charity.
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Launch of Nerve Tumours UK
Following a major strategic review, the Neuro Foundation charity is now known as Nerve Tumours UK.
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NF1 research award first for UK consultant
Dr Shruti Garg is the first non-US resident to receive NF1 $555,000 research award.
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