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Talented 20-year-old makeup artist, Claudia, talked to Truly about her EB. Nurses come in daily to painstakingly remove all Claudia’s bandages, clean her wounds and then re-dress them again – a process that can take up to four hours. “My achievements have definitely boosted my self-confidence – realising that you can do great things, no matter what the circumstances are. You have this disability, but you have defied the odds in many ways.”
EB causes a lack of collagen, which in turn means her skin is extremely fragile and blisters into wounds that can cover “up to 80% of [her] body.
“Nurses come in daily to painstakingly remove all Claudia’s bandages, clean her wounds and then re-dress them again – a process that can take up to four hours. As well as regular pain medications, these maintenance measures allow Claudia to go about the rest of her day – but EB is progressive and there is no cure, so her condition has deteriorated over time. Her fingers and toes have gradually fused together over the years and she has been left with only four fingers remaining on one hand.
Claudia’s parents, Elizabeth and Gary, provided all of her care growing up and had to develop best practices to protect her skin “on instinct.”
They have witnessed the gradual progression of her condition and felt helpless at times – but more so due to the social isolation their daughter experienced as a teenager: “We watched her, for six years, suffer the loneliness. You can’t fix that as a parent, you can’t make friends for your child.”
But Claudia found an outlet for herself during her tough high school years when she was inspired by watching makeup artists online. At the age of 13, she picked up a makeup brush for the first time and has never looked back – in the years since, she has developed into a “pure artist” and has recorded makeup content from her dressing table at home, which she posts to her rapidly growing fanbase on social media.
This, as well as several media appearances in support of Debra has thrust Claudia into the spotlight and she has exciting options open to her as she embarks on the next stage of her career. Her parents couldn’t be prouder: “You’d have to live with Claudia to be aware of the challenges that have been put in her way and she has overcome every single one of them… She is still here, still fighting physically and mentally.” And Claudia’s resilience is stronger than ever as she looks ahead to the future: “My achievements have definitely boosted my self-confidence – realising that you can do great things, no matter what the circumstances are. You have this disability, but you have defied the odds in many ways.”
