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

"Ayrianna is a fighter for sure"
Crystal shares her daughter, Ayrianna's story.
Crystal's story

"My doctor said ''you have to learn to live..."

Kamil Szczepankiewicz's story {mx_caption}

""I am a kind caring person who just wants to"

Charlotte Targgart's story {mx_caption}

"We are so proud of her."

Emma and Kiki’'s story {mx_caption}

"I try and not let this condition stop stop me"

Lydia's story {mx_caption}

"many doctors have told me it’s not NF1"

Michele's story {mx_caption}

"helped me through the dark times"

Richard's story {mx_caption}

"We have been together for twelve years now"

Gerald's story {mx_caption}

"...she is my warrior"

Gemma's story {mx_caption}

"NF has definitely affected me..."

Claire's story {mx_caption}

"I have NF but it's not going to beat me!"

Jaycee's story {mx_caption}

"It does not define me."

Sarah's story {mx_caption}

"he doesn't let it beat him"

Luke's story {mx_caption}

"I was diagnosed with NF1 when I was 6yrs old"

Natalie's story {mx_caption}

"...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}