DEBRA Australia has launched Youth Crew for people aged 12-22 living with Epidermolysis Bullosa (EB).
The program will take place on a private Facebook group page, where support for the rare skin disease can be accessed.
Ambassador of DEBRA Australia, Dean Clifford will be the program’s moderator.
Mr Clifford lives with EB and hopes his experience with the disease can help others.
“I think for a long time now the younger generation has needed their own platform,” he said.
“It gives kids and young adults their own identity, something that is uniquely theirs.”
The private platform will host live Q&As so only members can contribute to the discussion in real-time.
Mr Clifford said the topics will change, depending on what the youth need.
“I am hoping these open conversations will allow younger age groups to know they are not fighting this on their own,” he said.
“We have all been in their shoes at different stages and we can share how we overcame the challenging times.
“That is the main thing, live streaming and connecting with someone.”
Social media will allow young people living with EB to stay connected.
The National Library of Medicine published a study on the change in social relationships, due to COVID-19 lockdowns.
It found that 72 per cent of respondents saw very little of their friends in person, but the majority did not think this distance had changed their relationships.
Digital linking played a part in the preservation of friendships and communities.
Beyond Blue are advocates for staying connected and believe physical distance does not mean emotional absence.
Psychologist Sabina Read, a contributor to the Beyond Blue statement said it’s vital to schedule regular catchups online or on the phone.
“We underestimate sometimes the comfort that phone contact can bring,” she said.
“You can still feel a sense of connection and closeness even if it’s not face-to-face.”
DEBRA Australia aims to encourage online associations amongst their community, particularly since the condition is so unique.
The Australian Skin Health Institute estimated 1,000 Australians live with the disease.
General Manager of DEBRA Australia, Lise Angus said its unusual nature has fostered a tight-knit community which she hopes the online group will further sustain.
“Being a rare disease, generally EB sufferers don’t know anybody else in their family or social circle who understand what they’re going through,” she said.
“The Youth Crew will be a safe space for regular connection where you don’t feel isolated,
“Being able to share experiences with others who look and feel like you, certainly validate the condition.”
Social media allows connection at the touch of a fingertip, all while staying physically apart.
Tia Haralabakos
Tia Haralabakos is a Media Communications student at Monash University specialising in Journalism and human rights. She is interested in the multi-faceted landscape of digital media, particularly addressing challenges to online reporting like diversity and content moderation. Tia’s journalistic interests include human rights and social affairs.
