A woman with a rare genetic disease is taking life one day at a time – beginning a career in the makeup industry this week.
20-year-old Claudia Scanlon was born with Epidermolysis Bullosa, also known as butterfly skin.
Ms Scanlon explained she is essentially missing the layer of skin that holds all the other layers of skin together.
Roughly 300 people in Ireland have EB – and only three have her specific kind.
“So, my fingers and toes have fused fully together,” she told Lunchtime Live. “I can't walk anymore. I struggle to eat, and I struggle to maintain a daily life.
“I could be in better condition than some days, but mostly I take painkillers as soon as my mother wakes up, which would be about 6.30am.
“Some days are better than others, but as of late, I've been finding it really challenging as I find the condition has progressed a lot worse than I thought it would.”
'Not a common thing to see'
As a teenager, Ms Scanlon discovered makeup as an outlet and hobby, initially watching other makeup artists online.
Now, she is a talented makeup and special effects artist – and she revealed she started her first job at Sculpted by Amy last Tuesday.
“I didn't really see that happening in the foreseeable,” she said.
“It's not a common thing to see people with physical disabilities in the makeup industry.”
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Ms Scanlon specialises in traditional makeup looks – but is also skilled in cosmetics.
“I've done severed fingers and animals on people,” she said.
The makeup artist said she is “very lucky” to have the support of her family throughout her career and illness.
“It's not always a guarantee when you're born into this world to have the support system that I do have,” she said.
“So, I'm extremely grateful for my parents, and my grandmother as well.”
Butterfly skin
Butterfly skin leaves Ms Scanlon 25% more likely to develop skin cancer, as well as more prone to infections.
She has nurses who specialise in butterfly skin – although her family has had to fight for “every single hour of care that I have gotten”.
“My mother has done everything she possibly could and I'm lucky to have the staff I do now to look after me,” she said.
“Debra Ireland, also the charity I'm involved with, has fought my case every day, every single day.”
She said her nurses, who also specialise in other parts of the medical industry, have become “like family”.
“I go away with some of them on holidays,” she said. “It's no longer a patient-doctor job, you know, it's a real connective job and they've been everything to me.”
You can find Ms Scanlon's makeup account here.
