Safiya’s NF1 Journey

“Finding Confidence in the Unspoken”

My NF1 Journey – A Story I Never Expected to Tell 

2014 was the year my life changed and I had no idea why. I’d always wondered about the marks on my face and arms that began appearing during my teenage years. Every time I asked, I was told it was normal,  that skin can sometimes look like that. So, I carried on through most of my twenties, thinking it was just part of me.

It wasn’t until November 2013, when I went to see a gynaecologist because of heavy periods, that things slowly started to unfold. I was told I needed surgery due to an abnormality that needed to be checked more closely. The results thankfully came back benign, but I was referred to neurology, and from there, I was sent to a genetics clinic.

In 2014, I was told I had a genetic condition called Neurofibromatosis Type 1, something I had never heard of before. I didn’t know what a neurofibroma was. I didn’t even know a condition like this existed. I sat there hearing terms I didn’t fully understand , pregnancy complications, increased risk of breast cancer, learning difficulties, no cure, no treatment and none of it really sank in. It felt like too much to process all at once.

After testing, I was told that no one else in my family had the condition, it was just me. I remember feeling numb, confused, and very alone.

I was referred to plastic surgery, where I was told that any tumours that grow large or become uncomfortable could be removed. Over the years, I’ve had several taken off my face and body. With every procedure, I was left with scars, but every scar I have carries a story behind it. Some are reminders of the physical side of NF1, others of what I’ve been through emotionally. They all tell a part of my journey.

Over time, more tumours appeared and grew, which affected my confidence more than I wanted to admit. I started to develop anxiety around my appearance and how others would see me. I’ve also had to deal with comments, things like “Try acne cream,” “Go to India  they might have a cure,” or “What are those marks on your skin?” As an Asian woman, those words felt heavy. There’s still so much pressure around how a woman should look, and the judgement can come quickly especially when people don’t understand.

But what I’ve come to realise is that NF1 does not define me. Yes, it’s something I live with but it isn’t all that I am.

I’ve been lucky to have a supportive network around me  from family and friends to the people I work with. Their support has helped me through some of my hardest moments, especially the times I didn’t want to see myself in the mirror or when I constantly felt the need to explain myself.

For a long time, I stayed quiet about NF1. I used filters on photos and often felt like I wasn’t good enough. But in 2023, I had tumours removed from my face  and when the scars healed, something shifted in me. I looked in the mirror and saw someone who felt beautiful again. I felt like myself. And for the first time in a long time, I felt enough.

That feeling made me want to help others who may feel the same way I once did. I started distance learning and completed several courses in mental health and wellbeing something I’m really proud of. I know how anxiety feels, and I never want anyone else to feel alone in it.

I came across Nerve Tumours UK through the NHS website under the NF1 section. I reached out simply because I just wanted to speak to someone who understood. Since my diagnosis, I’d never met or spoken to anyone else with NF1, and often felt misunderstood. It’s been difficult trying to explain a condition that even many medical professionals openly admit they don’t know much about. That’s why I truly believe that more treatments, more support, and more awareness need to be put in place for those living with NF1.

I was introduced to Rebecca, a nurse from the charity, and she was so kind and reassuring. She supported me through my first mammogram earlier this year (2025), after I found a lump. Thankfully, the results were clear. But for anyone with NF1, a lump never feels normal there’s always worry. That’s why regular check-ups and guidance are so important.

Since then, I’ve started to speak up more about my journey  through Instagram and TikTok  to raise awareness, and to connect with others who may feel unheard. This year, I also took part in the 5K Race for Life, which I proudly dedicated to all NF1 heroes.

It’s taken me time to accept this condition and speak openly about it, but now I do so with more strength and confidence. My journey with NF1 hasn’t been easy, but it’s shaped me into someone who’s resilient, compassionate, and determined to make a difference