Helpline 07939 046 030

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

Filter by Date
Category
Reset

Centre for Appearance Research NF Survey - Results

Find out how you can take part in CAR's online survey about NF parenting and caring experiences.

Read More

Take Part in Dexter’s NF Documentary Project

Dexter shares his motivations for taking on his NF documentary project, find out how you can get involved.

Read More

Share your Covid-19 Story - Survey Results

Embracing Complexity share the results of their impact of Covid19 survey, find out more

Read More

Sarah’s Journey

Read Sarah's personal journey with NF

Read More

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

Ella’s editorial

Have a read of Ella's editorial as she shares her brave journey against NF1 with us!

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