The 22-year-old is living with Epidermolysis Bullosa (EB), a rare, incurable genetic skin condition – but she hasn’t let it hold her back from achieving her dreams
Makeup artist Claudia Scanlon(Image: Instagram)
22-year-old Claudia Scanlon is beating the odds everyday as she hopes to inspire people across the country and beyond to live their life to the fullest despite their disability.
Approximately 300 people in Ireland live with Epidermolysis Bullosa (EB), a rare, incurable genetic skin condition that causes skin to blister and tear at the slightest touch. The condition, which is also known as butterfly skin, affects around 500,000 people worldwide.
There are four main types – EB simplex (EBS), junctional EB (JEB), dystrophic EB (DEB), and Kindler EB (KEB), with more than 30 subtypes. At the moment, there is no cure and treatment of the condition presently consists of the management of symptoms. The symptoms of epidermolysis bullosa (EB) can vary, depending on the type you have.
Some types of EB have a low risk of serious complications, but others can be life threatening.
Makeup artist Claudia, who lives with EB, credits her parents’ influence for her incredible resilience.
“My mam and dad are both inner city Dubliners and they’re very strong willed people; strong minded and strong hearted in everything that they do,” she tells us. ”I think a lot of my strength comes from their personalities. They put their everything into me and making sure that I had a good life and a happy childhood and adulthood. I owe so much to them.
“I do owe a lot to myself. Even with them pushing me along the way I could have given up a long time ago, and trust me, there were times I was so close to it.”
Living with EB can be incredibly difficult at times, and Claudia, who was diagnosed at two months old, describes the condition as “cruel”.
“I was born with the worst living form. It’s a progressive condition so as I get older it will get worse,” she explains.
“I always describe EB as a giver and a taker. It takes multiple things as you grow up, from independence to social life and the ability to do anything for yourself. It gives you things like pain and itching and scarring.
“I get stared at everywhere I go. It’s an extremely difficult condition; it’s something you can only try and put into words to explain to the normal person in society. It’s horrific, it’s horrendous, and it’s cruel.”
However, despite the hardship, she made the choice to enjoy her life and make the most of her situation.
“You have two choices that you can make; whether you want to proceed with life and make the best of it, or you can sit in the corner and cry and mope and feel sorry for yourself and let life pass you by,” says Claudia. “Although EB has taken so much from me in my life, I substitute that with things I can do and things that I love and am passionate about.
“I put myself through college and I’ve been through mainstream school, so although my life is far from normal, I try to make it as normal as possible.”
Claudia is also someone who speaks publicly about living with EB, in the hopes it will inspire other young people to not let their disabilities define them or hold them back from doing what they love. After discovering a passion for makeup, Claudia was determined to get into the industry one way or another. She is now living her dream working with Irish brand Sculpted by Aimee.
“It’s been one of my biggest achievements in my entire life,” she gushes. “My parents put me through mainstream school and I put myself through college and graduated from there but once all the educational stuff is done and over with, you’re kind of left at a standstill and it’s your decision whether you want to do something you love or settle for something that you don’t necessarily have any passion for. A lot of people with physical disabilities are shoved behind a desk or in a call centre and it’s not something they have a passion for but it pays the bills.
“Once I came into my teenage years, I knew I had a passion for make-up and wanted to do it as a career. I applied everywhere and anywhere, from brands and department stores to freelancers. But because my disability is such a unique circumstance, nobody would take me. I had known Aimee (Connolly) through the industry for a little while and I asked for her advice as someone who is so strong in the industry; she’s a strong, powerful businesswoman who has built the brand from the ground up. She called me into the office and basically gave me a job on the spot, which I still think is crazy to this day. It’s been a wild journey and I’m so happy with where I am at the moment. I’m sure there’s a lot more to come.”
Does she have any advice for other young people living with EB?
“Just stay strong,” she says. “I can’t always give the guarantee that things will get better because that would be a lie. But surround yourself with people you love and have a good support system for when times are bad, because I know that’s what I’ve appreciated when I’ve gone through rough times.
“Look after your mental health. I think we can all forget that when you have a physical disability, it affects your mental health tremendously. Make sure your head is in a good space.”
You can follow Claudia Scanlon on Instagram @makeupbyclaudiascanlon.
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