Story Hub

We asked you how Neurofibromatosis has shaped your life and you sent us your personal stories via our #ShareYourStory page. Here we have collated your stories to share with the wider NF community so others can know that they are not on this journey alone.

Tell us your Story

Featured Story

"Throughout it all Olivia is still smiling...."
Hi, My name is Karen and my daughter Olivia (aged 15) has NF1. Olivia was diagnosed quite young at about the age of 3 years old so this is something our family...
Olivia's story

"...I knew something wasn't right"

Sophia & Harvie's story {mx_caption}

"...a lot of the time I feel alone"

Noreen's story {mx_caption}

"We had never heard of NF1 before"

Claire's story {mx_caption}

"I hope one day they find a cure for NF1."

Sarah's story {mx_caption}

"He is generally a happy, lively boy..."

Lauren's story {mx_caption}

"Polly is our hero and a true inspiration..."

Emily & Polly's story {mx_caption}

"I am not defined by it"

Duma's story {mx_caption}

"I might have NF but NF doesn't have me!"

Lisa's story {mx_caption}

"I couldn't be without him...sick or healthy."

Lucy's story {mx_caption}

"In early 2008 my son was diagnosed with NF1"

Debbie's story {mx_caption}

"There is so much stigma attached to NF..."

Ella's story {mx_caption}

"I worry about how NF will affect me..."

Julia's story {mx_caption}

"Never give up!"

Hellen's story {mx_caption}

"I have had NF1 since I was 3 years old."

Erin's story {mx_caption}

"Before the surgery I was shy..."

Edgerton's story {mx_caption}