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.
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Shine a Light 2020 Success!
Check out some amazing blue buildings that took part in our Shine a Light On Neurofibromatosis 2020 campaign
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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!
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Statement by Helen Tomkins our Specialist Neurofibromatosis Nurse UK
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No Laughing Matter
Tom is a former journalist, here he describes his journey from music journalism to comedy, & what his NF2 has to do with it
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Shine A Light on Neurofibromatosis 2020
Find out what we're up to for our Shine A Light campaign this year!
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Statement by Michael Fry our Chair of the Board of Trustees
The impact of the corona virus on the charity sector and Nerve Tumours UK's continued support to those affected by NF
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NF1, Plexiform Neurofibromas Market Research Study
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Statement by Rachel Jones & Rebecca Rennison our Specialist Neurofibromatosis Nurses UK
A statement on coronavirus by Rachel Jones & Rebecca Rennison specialist Neurofibromatosis nurses in the North East & Cumbria
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