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/samantha-gaden_370x280_800_600_s_c1.png)
Statement by Samantha Gaden our Specialist Neurofibromatosis Nurse UK
A statement on coronavirus by Samantha Gaden specialist Neurofibromatosis nurse in the North West
Read More![](https://nervetumours.org.uk/images/made/images/common/melanie-murrell_3_800_600_s_c1.png)
Statement by Melanie Murrell our Specialist Neurofibromatosis Nurse UK
A statement on coronavirus by Melanie Murrell specialist Neurofibromatosis nurse in the West Midlands
Read More![](https://nervetumours.org.uk/images/made/images/common/carolyn-smyth_370x280_800_600_s_c1.png)
Statement by Carolyn Smyth Lead Specialist Neurofibromatosis Nurse UK
A Statement on Coronavirus by Carolyn Smyth Lead Specialist Neurofibromatosis Nurse UK
Read More![](https://nervetumours.org.uk/images/made/images/common/martin-sanchez-Tzoe6VCvQYg-unsplash_370x270_800_600_s_c1.png)
COVID - 19 News from Children’s Tumour Foundation our partners in the US
Covid - 19 News from Children's Tumour Foundation our partners in the US
Read More![](https://nervetumours.org.uk/images/made/images/common/NF_Nurses_370x280_800_600_s_c1.jpg)
Working For The NF Community and Helping to Protect and Save The NHS
Coronavirus is impacting the NHS heavily including our Specialist NF Nurses; help us support them, find out how
Read More![](https://nervetumours.org.uk/images/made/images/common/top-header-rotary-logo-and-name370x280_800_600_s_c1.png)
Leighton Linslade Rotary Club hosts Brains of Leighton Buzzard Quiz
Leighton Linslade Rotary Club hosts Quiz in aid of Neurofibromatosis type 2, find out more here
Read More![](https://nervetumours.org.uk/images/made/images/common/Royal_Society_of_Medicine_-_Medicine_and_Me-370x278px_800_600_s_c1.jpg)
Postponed: Medicine and Me: Living with Nerve Tumours at the Royal Society of Medicine
Postponed: Find out more about the event at the Medicine & Me event at the Royal Society of Medicine here:
Read More![](https://nervetumours.org.uk/images/made/images/common/adolscent-nf1-dayDesktop-1600-x-900-px-copy_800_600_s_c1.png)
NF1 Teenager Support Day!
Bridie Windsor is a Deputy Clinical Nurse Specialist who has organised a support day for teenagers with NF1. Read more here:
Read More