Sarah’s Journey
22 February 2021
Hi, my name is Sarah, I am a frontline care worker and I was first diagnosed with Neurofibromatosis Type 1 at the age of 16. After a few years, when I was in my late 20s, they found some benign tumours on my brain, sitting along a nerve, this causes me to have regular crippling migraines. I have another benign tumour behind my left eye, which has reduced my vision to 60 percent. Unfortunately, due to the location of the tumours my neurologist says that they cannot be removed as it is too dangerous. I see my neurologist every 3 months to have my tumours checked as, even though they are not cancerous they are continuing to grow, and I have had multiple hospital admissions due to seizures caused by my tumours. The curvature of my spine is also affected by my Neurofibromatosis which causes me trouble.
Despite everything I try to focus on the positives. I'm a huge football fan and have a season ticket for Aston Villa. As well as supporting my team, I love to play football & rugby. I also love the Ultimate Fighting Championship (UFC) and I do Mixed-Martial Arts (MMA) regularly. Lockdown has been really hard, especially on my mental health but I'm getting there. My new interest is that I've learned to draw, so that's a positive from lockdown. I’m 30 year’s old now and still battling, this is my story.
Filter News
![](https://nervetumours.org.uk/images/made/images/common/Changing_Faces_Logo_370x280_800_600_s_c1.jpg)
Counselling support from Changing Faces
Changing Faces - Counselling support: confidential one to one support sessions for people with a visible difference
Read More![Nerve Tumours UK Community Survey](https://nervetumours.org.uk/images/made/images/templates/placeholder_800_600_s_c1.png)
Nerve Tumours UK Community Survey
This consultation provided direct feedback to the strategy group, to look at how we can continue to provide our services
Read More![](https://nervetumours.org.uk/images/made/images/common/IMG_7819_-_Suzi_NF2_-_edit_370x280_800_600_s_c1.jpg)
Suzi’s NF2 story
Suzi used her own NF2 diagnosis to inspire her research into how identity is experienced by people with NF2
Read More![](https://nervetumours.org.uk/images/made/images/common/Emma_Hartley_Liverpool_Fundraiser_Image_5_370x280_800_600_s_c1.jpg)
Emma’s Story
Emma shares her journey with NF after finding out her daughter, Poppy, has been diagnosed with NF Type 1.
Read More![](https://nervetumours.org.uk/images/made/images/common/tegan-mierle-fDostElVhN8-unsplash_preview_800_600_s_c1.jpg)
Tim’s Story: Living With Neurofibromatosis – it’s a family thing
Tim tells us how Nerve Tumours UK proved to be an invaluable resource and support to him and his family as he was growing up
Read More![](https://nervetumours.org.uk/images/made/images/common/Out_Walking_370x280_800_600_s_c1.jpg)
Dalvinder’s 100km Ultra Challenge for NF
Dalvinder on the 100km Ultra Challenge Thames Path walk to raise money for NF
Read More![](https://nervetumours.org.uk/images/made/images/common/Diana_Edwards_Nerve_Tumours_UK_Fundraiser_image_5_800_600_s_c1.png)
Diana’s One Month of Rowing for Neurofibromatosis
Diana is taking on an epic 150k rowing challenge - 5k per day to support her daughter Ellie & our NF community
Read More![](https://nervetumours.org.uk/images/made/images/common/Autistica_Research_Festival_Branded_Header_preview_800_600_s_c1.png)
Autistica Research Festival 2021
See how this year's event went and find out how you can watch the best bits if you couldn't make the conference.
Read More![](https://nervetumours.org.uk/images/made/images/common/IMG_1837_Carol_Irving_Nurse_Portrait_preview_800_600_s_c1.jpg)
OneMoreNurse joins the NTUK team in Leeds
We're delighted to announce our new Specialist NF Nurse for Leeds, find out more
Read More