JoJo’s NF1 Story

I was diagnosed with Neurofibromatosis Type 1 when I was 7 years old.

At that age, I didn’t really understand what it meant, I just knew I was different. 

As the condition became more visible, so did the emotional toll it took on me. It slowly chipped away at my confidence, especially as I moved through my teenage years. When I was 11, my world changed forever. My mum who also had NF1, developed breast cancer linked to the condition. She passed away when I was still just a child. Losing her broke me in ways I’m still learning to heal from. She was my strength, my protector, and my biggest comfort through it all. 

As an adult, the journey hasn’t become any easier. I recently went through a divorce after being with my ex partner for 20 years and a big part of that was down to how I look (and constantly being unwell and having to have multiple surgeries). Living with a condition that changes your appearance makes you question your worth constantly. It hurts when people can’t see past it — when they don’t take the time to understand who you truly are. 

Despite everything, I’m still standing. Some days are heavy, but I remind myself that surviving this journey is an act of strength in itself.  

I want to share my story to let others with NF know, you’re not alone. There’s pain, yes  but there’s also resilience, hope, and a quiet kind of courage in simply being yourself.  

All my love to every single one of my fellow NF Warriors. Love & Light JoJo