A group of Dublin-based TikTok stars have accepted a challenge to live with their hands fully bandaged, in an effort to raise awareness of the painful skin disease EB, epidermolysis bullosa.
EB causes the skin – both inside and out – to blister and wound at the slightest touch, and the only treatment for the distressing condition is painful bandaging to prevent infection.
The influencers from Ireland’s only TikTok house, the Go House were asked to experience life as a person with the condition to kick-start Debra Ireland’s EB Awareness week.
The influencers – Thomas Arnold, Nia Gallagher, Lauren Whelan, Jake Browne, Andrea Camila, Lewis Kelly and Ryan Mar, who have a combined following of over 8 million people – heard first-hand about living with EB from Emma Fogarty, 36.
More than 80% of Emma’s body is covered in open wounds and is bandaged every second day.
In a Zoom call, she told them how living with the condition had impacted her life and about her insistence on living as independently as possible.
Go House founder, Thomas Arnold, said the social media stars were shocked to learn of Emma’s life and the condition.
“They had never heard of EB before and they couldn’t fathom how much pain Emma goes through on a daily basis,” he said.
“When their hands were bandaged up, their inability to do everyday tasks really made them take stock and be grateful for what they have.
“As part of the challenge, they had to do everyday tasks like making a sandwich or applying make-up, which are extremely difficult with bandaged hands – to say nothing of the pain the people with EB have to endure.”
The initiative is being run in conjunction with Debra Ireland, the charity which provides support for EB patients and their families and also funds research programmes to find better treatments and possible cures.
This week is National EB Awareness Week and the charity is asking the public to get involved by following them on Instagram and Facebook and help make Ireland Be #EBAware.
“We are very grateful to the Go House for partnering with us during EB Awareness Week, particularly given their influence among younger people who may not have heard of the condition,” said Michelle Reynolds, Head of Fundraising and Marketing at Debra Ireland.
“Currently there is no cure for EB and the only treatment is painful bandaging of the skin to prevent infection.
“Bandage changes must take place every second day and can take three hours, sometimes more and we in Debra Ireland are striving to end this heartache by funding research into finding a treatment and one day a cure.”