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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Celtic Crossing NTUK fundraiser
On Wednesday 28 June, a team of 8, led by Paul Aubery, paddled from the Isles of Scilly to Sennen Cove in Cornwall.
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NF Awareness Day Fundraiser at Fyling Hall School
Bea's school held a blue & green themed fundraiser on World NF Awareness Day
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Eden Study
Investigating early social, communication and attention development in babies who have NF1/ or a parent has NF1
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Bethany’s South Coast Challenge
Bethany is taking on the 25km South Coast challenge to give back after recovering from nerve tumour surgery
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Eden-P Research Study
Participants required for research study for pregnant women who have a family history of NF1
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Resources Survey: Initial Diagnosis
Take part in our survey and help shape Nerve Tumours UK's support service for those newly diagnosed with NF
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Appearance Collective NF1 support survey
Appearance Collective, Centre of Appearance Research (UWE) online survey on what support is needed for those affected by NF1
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Shine A Light - Swimming for World NF Day
Mel, one of our Specialist NF Nurses, will be swimming 17 miles to Shine a Light during World NF Month
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