Hospital gowns are becoming a little too familiar…

Turning 40 brought an important milestone in my journey,  having my first mammogram, something that really highlighted how important it is to stay aware of your health and listen to your body.

Living with Neurofibromatosis Type 1 (NF1) has shaped me in many ways, but it does not define who I am. Over time, it has taught me acceptance not just of my condition, but of myself. I’ve learned that embracing it feels far more empowering than trying to hide it.

There was a time where I relied on filters, and while the validation felt comforting, it never truly reflected who I was. Now, I feel confident showing up as my natural self and embracing who I am without feeling the need to hide behind anything.

Over the past few years, I’ve had a mix of 36 lesions and tumours removed, and this journey continues. Living with NF1 is something I carry every day. It may not always feel easy, but it has shown me a strength and resilience I didn’t always realise I had.

In my experience, one of the challenges has been that not all medical professionals are familiar with NF1. At times, this has meant doing my own research and learning more about my condition so I can better understand my body and advocate for myself. That being said, the support I’ve received from the Nerve Tumours UK community and specialist teams has been incredibly reassuring, and it has made such a difference in my journey.

NF1 can come with additional health considerations, including an increased risk of breast cancer. This means regular screenings, ongoing check-ups, and learning to really understand your own body. You begin to recognise what feels normal for you and when something feels different.

I cannot stress enough how important it is to keep up with your smear tests, check your breasts, and listen to your body. If something doesn’t feel right, trust yourself and seek advice. Your health truly matters. 

This year has included more time in hospital, with surgery on my back, spine and breast care, and I’m currently on the waiting list for further procedures. Waiting for scans, appointments and results can sometimes bring a sense of uncertainty, especially when hospital visits become part of your routine. But through it all, I’ve learned to take each step as it comes and stay grounded in a positive mindset.

The NF Community was there for me!

One of the most meaningful parts of my journey has been the connections I’ve made. Through sharing my story on Instagram and TikTok, I’ve met so many people around the world living with NF1. The kindness, support and shared understanding has been something really special, and it’s something I will continue to be part of.

Creating the hashtag #nf1diaries has been my way of encouraging others to share their journeys too, because awareness matters and every story deserves to be seen and heard.

I’ve been taking part in Race for Life for a number of years now, and over the last 3 to 4 years, I’ve been doing it solo, something that has become really personal to me. Each time I take part, I dedicate it to everyone living with NF1. It’s my way of raising awareness, reflecting on my journey and recognising the strength it takes to live with this condition every day. It’s never just about the run, it’s about the meaning behind it, and this year I will be doing it again, continuing that journey with the same purpose, one step at a time.

Living with NF1 has also given me a new sense of confidence. I feel content showing up as my true self, without worrying about what others may think. The support I’ve received has been overwhelming in the most beautiful way.

This journey has also inspired me to start thinking about writing a children’s book, one that celebrates being different and helps children feel seen, understood and proud of who they are. I want it to be something a child can pick up and feel a sense of belonging, a reminder that being different isn’t something to hide, but something to embrace.

If sharing my story helps only one person to feel visible, heard or supported, this person will be more confiedent and  I will have achieved my goal. #makeNFvisible

For me, awareness matters because it creates understanding, encourages early action and reminds people that they are not alone. Because at the end of the day, this journey isn’t just about me, it’s about creating space for others to feel confident, understood and proud of who they are.