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

Emily Owen Member of the Board of Trustees takes over our Social
‘All the World’s a Stage…’ (Shakespeare) Welcome to our World NF2 Day 2020 Theatrical Entertainment
Read More
Face Equality Week 2020
Changing Faces continues to campaign amidst the current crisis - Face Equality Week
Read More
World NF 2 Day May 22nd 2020
See what we're up to for this World Neurofibromatosis Type 2 day
Read More
Statement by Mary Thomas Clinical Neurofibromatosis Nurse UK
A statement on coronavirus by Mary Thomas clinical nurse at Guy's and St Thomas' NHS Foundation Trust
Read More
Shine a Light 2020 Success!
Check out some amazing blue buildings that took part in our Shine a Light On Neurofibromatosis 2020 campaign
Read More
Sarah’s Story as told by her Father Clemence
Read more about Sarah's story and her Shining a Light on NF from home for World NF Awareness Day!
Read More
Statement by Helen Tomkins our Specialist Neurofibromatosis Nurse UK
A statement on coronavirus by Helen Tomkins specialist Neurofibromatosis nurse in Devon & Cornwall
Read More
Courtney’s Story
Read more about Courtney's NF Story and how she overcomes her difficulties
Read More