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/Emily_370x280_800_600_s_c1.jpg)
World NF2 Day 2021 Emily Owen Member of our Board of Trustees Takes over our social
Read More![](https://nervetumours.org.uk/images/made/images/common/Hettie_Sale_Strollers_-_Garden_Challenge_370x280_800_600_s_c1.jpg)
A Big Thank You to all our Garden Runners!
Find out how our Garden Runners got on this World Neurofibromatosis Awareness Day - May 17 2021
Read More![](https://nervetumours.org.uk/images/made/images/common/Advert_English_370x280_800_600_s_c1.jpg)
Centre for Appearance Research (CAR) - Somali Heritage & NF Study
If you are from Somali heritage and have NF, the Centre for Appearance Research (CAR) want to hear from you.
Read More![](https://nervetumours.org.uk/images/made/images/common/Alice__Markus_at_National_Theatre_Shine_A_Light_Blue_2021_370x280_800_600_s_c1.jpg)
Shine A Light 2021 Success!
Another incredible year, 92 buildings lighting up blue to Shine a Light on Neurofibromatosis as part of this year’s campaign
Read More![](https://nervetumours.org.uk/images/made/images/common/Patrick_Smith_Image_1_370x280_preview_800_600_s_c1.jpg)
Living Different: Patricks’s NF2 Blog
Read his attempt to build people's understanding of the challenges with disabilities
Read More![](https://nervetumours.org.uk/images/made/images/common/Beths_Dog_Show_2021_-_preview_800_600_s_c1.jpg)
Beth’s Novasper Online Dog Show 2021
Find out how you can get involved in this year's fluffiest and loveable online dog show!
Read More![](https://nervetumours.org.uk/images/made/images/common/Christian_-_Ellie_Davis_Garden_Challenge_4_preview_800_600_s_c1.jpg)
Christian’s Story
Christian's Mum, Ellie, share's their journey with NF & why they decided to get involved with this year's Garden Challenge!
Read More![](https://nervetumours.org.uk/images/made/images/common/Tate_Shine_A_Light_Marathon_-_Finished_preview_800_600_s_c1.jpg)
Tate’s Shine A Light Marathon
Tate's mum shares his incredible journey with NF & why he took part in our Shine A Light Marathon to help others like him
Read More![](https://nervetumours.org.uk/images/made/images/common/Euro_NF_Conf_Rotterdam_Dec_2020_preview_800_600_s_c1.jpg)
Virtual Medical Meetings
Conferences in 2020 went online meaning the whole nursing team and key members of the head office were able to attend
Read More