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Lived Experience Stories

NF affects people from all walks of life, and behind every person diagnosed is a different story filled with hopes, fears and challenges, but also firm reminder of their strength and optimism – these are the stories of our NF Heroes.

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Bella's Story
NF1 Hero Story
Bella's Story

Bella was around 5 months old when we first discovered cafe au lait spots on her, but I brushed it off as nothing. Despite googling and learning about NF, I assumed I was an ‘anxious first time mum.’

May 05, 2026

Sammy's Story
NF2-SWN Hero Story
Sammy's Story

Sammy's Story, navigating life with NF2 as an 8 year old, as told by his mum, Alicia.

October 13, 2025

Mia-Louise's Story
NF1 Hero Story
Mia-Louise's Story

Diagnosed at 18 months - the 3rd person in her family to have NF.

August 20, 2025

Morgan's Story
NF1 Hero Story
Morgan's Story

From Silence to Strength

May 16, 2025

Eleni's Story
NF2-SWN Hero Story
Eleni's Story

Diagnosed at 51—but living with symptoms for decades.

May 12, 2025

Esther and Archer's story
NF1 Hero Story
Esther and Archer's story

I was 35 when I was diagnosed. My son, Archer, had just turned one.

March 25, 2025

Share your story

Sharing your NF story can be an empowering experience. It may help you to cope with a diagnosis,remind yourself of challenges overcome and validate how you have been feeling.