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Chloe’s NF1 story

20 April 2022

I was about 9 years old, when my Mum took me to the doctors, as I had lumps around my head and behind my ears.

The Doctor said it was head lice bites, but after a few times of returning, I was referred to the hospital and from then on, it was discovered that I had Neurofibromatosis Type 1.

I used to have a lot of dizzy spells and head aches when I was younger and I as I got older, back pain was starting to become a problem. I was advised to exercise or to practice safe manual handing, as they couldn’t understand why it was a problem, and again after going back and forth, I was referred back to the hospital for a MRI, where they found more tumours on my spine, which were causing me the pain. 

"I was so relieved to have answers, as it started to feel like I was screaming for help, yet every time, it felt like I was shut down, or that no one believed me. Those days in bed, when I felt I can’t/ don’t want to move because of the discomfort, suddenly felt heard. "

– Chloe

I’ve had 3 operations in total so far, and nerve damage and more growth has caused me to have Foot Drop. It’s been about 2 years since this happened.  

I used to be a girl that loved dancing at festivals and gigs, or strolling around in summer in sandals, I can no longer drive because of it and one of my favourite things to do was to take myself for a drive with my favourite music. I miss all that things.

I’m in the early days of accepting the way my legs and feet work now and I’m learning to live with a disability, that I ultimately have to live with and move on.  

But I wanted to share my story, in hope that someone else might read this, that is only just coming to terms, or even still have bad days, and to know they are not alone.

It’s wonderful seeing good stories and there are some inspiration people out there but often, the raw, honest truth makes me feel like it’s OK and I don’t feel so isolated.

Saying all that, I do get bad days.

But I don’t hate that I have NF.

It’s part of me.

Something that is so unique and different.

It makes life difficult and painful, but I wear it with pride because it’s made me determined and strong, because even when I feel the way I do, a lot of the time, I take pride in the fact that I am a strong woman, and NF has a big role to play in that becoming a part of me.