Thomas’ NF1 story

Hey there, I'm Thomas, a 32-year-old from Wickford, Essex.

Life's been a rollercoaster with this thing called Neurofibromatosis type 1 (NF1) tagging along since I was a kid.

You'll spot these coffee-stain-like marks all over my body - they're what folks call café-au-lait spots. Back in school, everyone used to ask me why I had so many birthmarks, which was pretty embarrassing at the time.

Then there's the glasses I gotta wear because of these optic nerve gliomas – two of them, one in each eye, and another lurking in my brain.

Great Ormond Street Hospital was my stomping ground as a kid, but when I hit 16, they passed the baton to South End Hospital. Now, I make the trek to St. Thomas's Hospital in London, where I see Dr. Josh Hersheson.
 

For me, I've been lucky  – besides needing specs, it hasn't messed with me much.

But watching what it did to my late mum, that's a different story. She was just 16 when it hit her. Surgeries, shunts, and a slew of complications followed, eventually landing her in a care home. Cancer decided to join the party too, and with her history, there wasn't much they could do.

School was pretty standard for me, despite a few hiccups along the way. Uni was on the cards, but I couldn't bear to leave Mum. So, I found myself in the world of IT. I wanted to be in the world of car sales instead. Not what I'd planned, but it pays the bills. I enjoy where I work, I have worked with some amazing people during my career and have made some life long friends. I have been lucky with my job to be able to work my way up, and gain promotions and job changes.

Day-to-day, it's a bit of a juggle. Headaches that knock me out, and my feet playing up, needing these fancy insoles. Sometimes they even lock up on me, which isn't fun.

Speaking of challenges, I'm gearing up for a 10k run this summer, all in aid of Cancer Research. My missus, she's a fighter too, having battled cancer herself and even going through heart surgery last year. She's my rock, and together, we hit the gym, supporting each other through thick and thin.