Stories from people impacted by EB

Sharing a personal story, may not always be easy. But it can be empowering. It can be cathartic.

It can be crucial in breaking the isolation felt when EB is not understood.

Stories unite us. They connect us. They educate us.

We are a platform to your story.

Share your story with us

EB stories

A day of memories, community and support for families living with EB

Trying Botox and sharing advice

Botox injections can help people living with EB

Sophia’s story: playing football and dancing through pain to raise awareness for EB

A marathon powered by friendship

Bonnie’s Christmas Story – “When will I be better? I want proper skin like my cousins… I want to be a different kid.”

Kalebh Fynes scaled one of the world’s tallest mountains in memory of his brother, Aaron

You helped me make EB a global phenomenon

Wexford brothers Dean and Dillon Doyle: stronger together in raising awareness of EB

‘My Butterfly Skin rips with the softest touch’, Claudia Scanlon shared with Truly

Mary Rose Ward spoke to us about life for her daughter Charley who was born with EB.

This is Liam's story "We loved Liam with every ounce of our hearts and he brought us so much joy – that never changed but having a child with EB had its struggles, particularly at the start."

When Ruaidhri was born, his mum Amanda saw the blisters

This is Curtis's story

RIP Curtis always loved by Mam. Dad. Ryan and Kyle

R.I.P. 1993 – 2003 Adam Graham's story

We remember Robert O'Neill

"The pain isn’t the worst thing about EB – it's all the staring."

Bobby's bespoke booklet helps him explain his Butterfly Skin to his classmates

'I'd love to find some lovely guy who accepts me. That type of love is something I crave all the time.'

This Christmas, we shared Katie's story

Casey was able to overcome her fear of hospitals thanks to Bumbleance service

“I think it’s important to raise awareness of EB because the greater the understanding the less difficulty people like me will face every day”

"I want even one parent to see that their child will get through it and life won’t be all downhill"

Kim’s story: the love of a grandma knows no limits

'Ain't no mountain high enough' for Fiona

News Darcee is starting school with the help of her own personalised EB booklet

Scarlett (EB simplex) shares how her condition can be invisible to the outside world

Alison is determined to help other people living with butterfly skin in Ireland and beyond

Sophia wishes the Women’s National Football Team best of luck in the World Cup

Sophia loves football – In her world difficult never equaled impossible

We have to act now – Join Emma Fogarty in our “Small ask, big impact” campaign

Maria is starting school with a little help from Debra

Seamus (EB simplex) shared his life experiences with us

Share your story

We need to tell the stories of everyone impacted by EB. This is at the heart of our work. By showing the truth about your experiences, passions and hopes, we can raise desperately-needed awareness.

But by showing what it’s really like and what’s needed to make society better and fairer for people with EB, we will bring people closer to our work.

Share your story