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
![](https://nervetumours.org.uk/images/made/images/common/IMG_0096_tiger_370x280_800_600_s_c1.jpg)
Runderpants fun run
Get your Runderpants here! Set up a fun run wearing some special fundraising pants
Read More![](https://nervetumours.org.uk/images/made/images/common/Sarah_Cockroft_2_website_370x280_800_600_s_c1.jpg)
Meet Sarah, our new Specialist NF Nurse
Sarah will be based in Leeds, supporting families across Yorkshire and Humberside
Read More![](https://nervetumours.org.uk/images/made/images/common/Charmaine_Forrester_800_600_s_c1.jpg)
Meet Charmaine, Our New Specialist NF Nurse
Read More![](https://nervetumours.org.uk/images/made/images/common/FB_IMG_1667295994710_370x280_800_600_s_c1.jpg)
Olivia’s NF1 story
Olivia and mam Kelly share their NF1 story, highlighting school achievements and support from NTUK Specialist Nurses
Read More![](https://nervetumours.org.uk/images/made/images/common/20230517_190605_370x280_800_600_s_c1.jpg)
Eashan’s NF1 story
'Why Run'... Eashan was diagnosed with NF1 after losing his eyesight when he was 5. His mother Jen tells his story.
Read More![](https://nervetumours.org.uk/images/made/images/common/20580-Ratios-Bus-Press-Advert-225x168_New_code_Low_res_370x280_800_600_s_c1.jpg)
2023 Awareness Campaign
Nerve Tumours UK have joined forces with RBH to raise awareness for a second successive year.
Read More![](https://nervetumours.org.uk/images/made/images/common/CAR_VTCT_logo_370x280_800_600_s_c1.jpg)
Disclosing and explaining visible differences - CAR Workshop
Read more about the workshop, featuring additional guidance from Specialist NF Nurse Rebecca Rennison
Read More![](https://nervetumours.org.uk/images/made/images/common/Jo__Oscar_370x280_800_600_s_c1.jpg)
Jo Ward’s Avastin Blog
Jo Ward, CEO of NF2 BioSolutions UK, shares a blog about her son Oscar's Avastin journey
Read More![](https://nervetumours.org.uk/images/made/images/common/NL_and_HRH_Pune_with_photo_370x280_800_600_s_c1.jpg)
Nigel’s story - Normal is as normal does
Nigel lived a normal life until age 47. The next 20 years took him from NF1 to NF2 to Schwannomatosis to mosaic NF2
Read More