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

Hour of Power – Love Yourself Valentine’s Day workout for NF
Thanks to all those that got their hearts pumping this Valentine's Day for our NF community!
Read More
Rare Disease Day 2021 and Rare Reach Festival
Find out how you can get involved in the first ever Rare Reach Festival and make sure the Rare communities voice is heard!
Read More
NF Said
Daisy takes on a 38-mile running challenge for her sister Millie, 1 mile a day for every person diagnosed with NF2 a year
Read More
Love Yourself - Hour of Power in Support of the NF community
Get your sweat on and spread the love this Valentine's day for our NF community!
Read More
Pat’s NF Fundraiser Walk
Read all about Patrick's incredible fundraising efforts to help others affected by NF!
Read More
Laura’s Marathon effort!
Laura beats our 26.5 mile challenge and takes it to the next level - matching miles with donations, find out what she's up to
Read More
Research call: Does neurofibromatosis affect how you feel about your body?
Find out how you can improve self-help methods for people living with neurofibromatosis
Read More
Stitched up by Celia
Get inspired by Celia's creative online haberdashery shop for Nerve Tumours UK!
Read More
NF1 with Plexiform Neurofibromas Study: information for patients and carers
Find out how you can help shape the future of NF1 healthcare
Read More