Campaign urges wearing clothes inside out to show EB awareness
This year's EB Awareness Week runs Oct. 25-31
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In the week leading up to Halloween, advocates around the world will wear their clothes inside out to raise awareness of epidermolysis bullosa (EB).
EB Awareness Week runs this year from Sunday, Oct. 25, to Saturday, Oct. 31. The Inside Out campaign is being spearheaded by DEBRA International, a global EB advocacy group.
“During EB Awareness Week, DEBRA International is inviting all DEBRA groups and partners to take part in Inside Out — a powerful international campaign to raise awareness of EB and vital funds for those living with this painful, incurable condition,” the group states on its website.
EB encompasses several disorders characterized by abnormally thin, fragile skin that is prone to blisters and wounds that don’t heal well. The Inside Out campaign is inspired by the fact that people with EB often go to great lengths to avoid anything that could damage their skin — even the seams inside clothes.
“Wearing your clothes inside out for a day highlights a daily reality for children with EB, who often wear clothing this way to avoid painful seams against their fragile skin,” DEBRA says.
‘Hard to say and hell to live with’
DEBRA and other advocacy organizations are encouraging people who know about EB to wear their clothes inside out, and talk about why they are doing so, in person or on social media using the hashtag #InsideOutforEB.
“The more awareness we can raise of EB, the more support we can generate, and the more funding we can put into research – and the closer we can get to a cure!” the research-funding group Cure EB states on its awareness week webpage. The group describes EB as “hard to say and hell to live with.”
To help advocates spread the word, DEBRA is offering a range of downloadable resources including an email template, social media tools, and posters that can be printed or distributed online.
Another research-focused group, the EB Research Partnership (EBRP), is marking this year’s awareness week with a fundraising campaign. Donations up to $100,000 are being matched by the family of Charlie Oros, a boy who lives with EB.
The family’s hope “is to rally the EB community to give this week and beyond, so more funding reaches vital, innovative research for Charlie and everyone living with EB,” according to the campaign website.
“For EBRP and the EB community, raising awareness is a huge priority every single day of the year, because EB never takes a day off and neither do we,” Allison Bolshagettigan, director of programs for the group, told Epidermolysis Bullosa News.
“Whether it’s on a Town Hall webinar, at a conference, ringing the bell at the New York Stock Exchange, or on Netflix, we are constantly telling the world to pay attention to EB, that this community matters and deserves more treatment options,” Bolshagettigan said. “What makes EB Awareness Week special is that it gives the community a dedicated moment to come together and share their stories, stories they might not otherwise have felt comfortable telling.”
The EBRP is also gearing up for the 10th annual Plunge for Elodie, a fundraiser in which participants acknowledge EB by jumping into frigid water, to be held next April.
“The Plunge is such a powerful way to bring people together because anyone can take part and make a splash!” Bolshagettigan said, noting that the event “began with ten childhood friends rallying their community, and it has since grown into an international movement with more than 20 locations around the world and over 14,000 supporters, whose generosity has raised over $3.5 million for groundbreaking EB research!”
“After taking the Plunge, attending Venture Into Cures, running the NYC Marathon on Team EBRP, or however someone has chosen to get involved, I hope they come away with the understanding that while EB can at times be devastating and so isolating, nobody suffers alone,” Bolshagettigan said. “This community supports each other and fights for each other in ways that I’ve never experienced before.”
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