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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Shine a Light on Neurofibromatosis
World Neurofibromatosis Awareness Day - May 17th. Help us raise £ 26,500 for 26,500 people in the UK who have nerve tumours.
Read More![](https://nervetumours.org.uk/images/made/images/common/jem-nd-richPage-Preview-800-x-500-px_800_600_s_c1.png)
Jem Musselwhite and Rich White are fundraising by walking the Pilgrims’ Way
Jem and Rich are walking more than 100 miles to raise money for Nerve Tumours UK. Find out more here:
Read More![](https://nervetumours.org.uk/images/made/images/common/Rachel-Page-Preview-800-x-500-px_800_600_s_c1.png)
Meet Rachael
Rachael Reynolds is a 43-year-old mother of four, living in Huddersfield. She recently appeared in the Channel 5 programme,
Read More![](https://nervetumours.org.uk/images/made/images/common/Beijing-MarathonPage-Preview-800-x-500-px_800_600_s_c1.png)
Meet Our Two Marathon Runners from China
Meet our two runners from China who like to partake in marathons across the globe.
Read More![](https://nervetumours.org.uk/images/made/images/common/Andrew-Leak-MarathonPage-Preview-800-x-500-px_800_600_s_c1.png)
Andrew Leak is set to Complete 10 London Marathons!
Andrew Leak is about to complete his mission of running 10 London Marathon's! Find his press release here
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Meet Gemma
Gemma Barnish has NF2 and has recently gotten married, find out more about her intriguing life here:
Read More![](https://nervetumours.org.uk/images/made/images/common/KIDZ-ADULTZPage-Preview-800-x-500-px_800_600_s_c1.png)
Kidz to Adultz Exhibitions
Kidz to Adultz offer a number of free exhibitions across the year to offer adivce and information on living with a disability
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Centre for Appearance Research at UWE want you to help test online support for people with Nerve Tumours
Centre for Appearance Research are looking for people with Nerve Tumours to test their new online support
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Support Specialists Challenges and Ambitions
Read more on both Rachel and Carolyn's views on their ambitions and challenges faced as Support Specialists
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