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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“Charity Shave Off” for NF in Northern Ireland
Janice and her family recently held a charity shave off in Northern Ireland. Find out more about the event here:
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Blackpool Magic Convention 2020
Find out more about the convention in aid of NTUK and how you can get involved here:
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Reflections on 2019
Check out our reflection on what we feel was an incredibly succesful 2019 for the charity:
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Helen’s Story as told by her Mum Pauline
Due to her NF1, Helen has faced several struggles. Mum Pauline has openly shared her daughter's experiences with us here:
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Nicola’s NF2 Journey
Nicola creates her own YouTube videos to help promote NF2 awareness. Find out more about her NF2 journey here:
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Making the Future of Work inclusive of persons with disability
Check out James' recent presentation at a conference in Geneva highlighting issues of "face equality" in the workplace
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The Royal Society - A Quest for the perfect Human…? A debate on the implications of human genome editing
Find out more about the debate recently undertaken at The Royal Society here:
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Appearance Matters: Prof Diana Harcourt and Maia Thornton
Find out both Diana's and Maia's views on their work and the importance of their work for people with NF:
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Jane Frances
Here Jane Frances tells us how findings from psychological research can help parents and teachers of children with NF
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