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"
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Wass’ Everyday Battlers 10K Stratford Run
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Megan’s Skyfall
Megan is undertaking a sponsored skydive for NTUK as part of her travels! Find out more here
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Glen’s Half Marathon in Support of his Nephew Freddie.
Have a read about the special young boy who has inspired his uncle take on the New Forest Half Marathon
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Jessica’s Amazing Fundraising Efforts
Have a read about the incredible 7 year old fundraising girl who is supporting research into NF1
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Smiling Through
Have a read about Melanie and her courageous young son Emilio (NF1) and the impact NTUK has had on their lives.
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Our 2019 Christmas Card Competition Winner!
See our Christmas Card winning illustration here
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Helen’s Story
Have a read of loving Mum Helen's Story and how she cares for her wonderful daughter Gaby (NF1)
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Looks and Life: A summary of the study
Have a read about the findings from the UWE's "Looks and Life" Study
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Kate’s Story
Have a read of Kate's inspiring story including the introduction of her beautiful daughter Esme, who has NF1, into the world.
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