December 08, 2025Interview

Katie’s Journey With Neurofibromatosis, Chronic Illness & Spinal Injury

When we first connected with Katie, we immediately recognised her power. She's honest, creative, softly fierce, and deeply committed to disability advocacy. At just 27, she has already lived through more medical challenges than many face in a lifetime, and yet she radiates kindness, resilience and authenticity.

From childhood spent in hospitals, to rebuilding her identity after a spinal cord injury, to rediscovering confidence with mobility aids that finally feel like her, Katie’s story is one of survival, self-acceptance and finding purpose through community. We have absolutely loved getting to know her, and we are so proud to share her story.

We hope it resonates with you as much as it has with us.

"Within a year, the curve in spine was over 100°"

Hi, I’m Katie, a 27-year-old disability activist and content creator from Somerset. In my spare time I love doing my makeup, being creative, reading and spending time with the people I love, including my dog, Lily, who absolutely counts as a person in my world!

I live with multiple disabilities and chronic illnesses:
Neurofibromatosis Type 1, Kyphoscoliosis, an incomplete spinal cord injury, chronic pain and CFS/ME.

I was born with NF1, and life was completely normal until age 4, when they discovered I had scoliosis. Within a year, my curve had reached over 100 degrees. Hospitals, MRIs, pain, and surgeries quickly became my childhood. Growth rods were fitted, and for years I was in and out of surgery every six months. Despite everyone’s best efforts, it eventually developed into kyphoscoliosis.

Missing so much school meant I lost big chunks of “normal” childhood life, and when I was at school, I was bullied relentlessly. Most of the comments were about my disability or appearance, and that’s where my body image struggles really began.

Outside all of that, my parents did everything humanly possible to give my sister and me the best childhood they could. They squeezed joy into places pain couldn’t reach like fun days out. Those moments mattered.

Then, at age 12, I had a spinal cord injury due to the pressure of the curve in my spine, and life changed again. I grieved so much. My mobility, my independence, the version of myself I thought I’d grow up to be. And every part of my disability became magnified. I also became painfully aware that I never saw anyone who looked like me represented anywhere. This planted the seed of the advocate I would later become.

"NHS sticks? They weren't it"

I’ve used mobility aids on and off for most of my life, from wheelchairs as a child due to breathlessness and pain, to walking frames, to sticks, to nothing for a while, and then back again.

Two or three years ago, after battling a lot of internalised ableism, I finally allowed myself to start using a walking stick again. It changed everything: my pain is lower, I feel steadier, and I get far less wiped out after walking.

But NHS walking sticks? They weren’t it. The grey, rattling, clinical look made me feel even less confident using one.

Then I found Cool Crutches.

Suddenly mobility aids could be quiet, comfortable, stylish, and something I could match to my outfit instead of something I wanted to hide. It sounds small, but when you’ve spent your whole life wishing you could blend in, having a mobility aid that feels like you is powerful!

I started with plain Black and Pink designs so they could easily blend into my outfits, but now I feel more confident in myself and my disability, I have a Gold Chrome and Disco stick which I LOVE!

"I might not always love it, but it carries one hell of a story"

Today, my disabilities impact almost every part of daily life. I live with constant pain and severe fatigue, it's actually the worst it’s ever been, and it’s a huge part of why I recently had to quit my job. That decision was heartbreaking, but also necessary.

As I’ve grown older, my relationship with my body has changed. I won’t pretend I love it all the time, but I’ve learned to respect it. It has been through so much, and it carries one hell of a story.

Living with a disability is emotional. There’s grief, joy, frustration, pride, sometimes all in the same day.

I give myself permission to feel it all. Suppressing emotions only makes everything heavier.

"Disabled representation is still rare"

While society has improved, there is still such a long way to go. Authentic disabled representation is still rare, and often dismissed.

A recent example is a non-disabled actor was cast to play a disabled character in a major musical in London. The disability community spoke out, but unfortunately we were ignored, and now the production has even been nominated for awards!

Disabled characters should be played by disabled actors.
People are willing to learn, but certain industries still need to catch up.

My Disability Tips

Find your community. Disability can feel isolating until you find people who just get it. Having a safe space to talk openly has been life-changing.
If you’re unsure whether you “need” a mobility aid, you probably do. Non-disabled people don’t ask that question. If it helps you live better, that is reason enough.
Celebrate the small wins, even if the win is simply getting out of bed and reaching the sofa.

What’s Next For Me

My hope is that now I’m not working, my energy will stabilise enough for me to return to creating content, both disability-related and makeup-related. Back in 2020, I had so much more time to be creative and experimental, and I can’t wait to reconnect with that part of myself again.

I want to keep advocating, keep showing up, and keep being the representation I desperately needed growing up.

Thank you so much Katie for sharing your raw and honest story. If you would like to follow Katie for her brilliant disability content, then here is her Instagram.

If you would like to read more inspiring stories or gain some helpful info on living with a disability, then try this: