‘I’d love to find some lovely guy who accepts me. That type of love is something I crave all the time.’

Source: The Independent

Claudia Scanlon (19) is a talented young make-up artist with a keen eye for colour and precision. She has more brushes, palettes and glam products than your average department store concession, and has completed an accredited make-up artistry course at Blackrock Further Education Institute.

Claudia can’t wait to make a start on her professional career, and while she exudes passion and determination, she hasn’t had much luck to date with job applications. She wonders if having the rare genetic skin condition, epidermolysis bullosa (EB), is proving a barrier.

“I’ve been applying for things left, right and centre and it’s been proving more difficult than I thought it would be,” Claudia admits. “I think people are intimidated by me having a physical disability and are scared to hire me because they’ll have to adapt to my requirements.”

People living with EB are missing the essential proteins that bind the skin’s layers together so any minor friction, movement or trauma causes it to break and blister. This fragility is why the condition is also known as “butterfly skin.” There are an estimated 300 people living with EB in Ireland, of which there are four different forms with additional subtypes. An estimated 70pc have the “simplex” form, where blistering is typically confined to the hands and feet.

Claudia is one of around 10 people in Ireland with the more severe form known as “recessive dystrophic” EB (RDEB). This form occurs when the individual inherits two faulty genes – one from each parent – and it can cause severe pain, blistering and wounds to both internal and external skin. It can affect the eyes, throat, bowels and digestion, and fingers and toes can fuse together as a result of scar tissue. There is also the risk of an aggressive form of skin cancer from early adulthood.

“RDEB is the worst living form of EB and I’m affected internally and externally,” explains Claudia, who can eat but is PEG- (tube) fed 1,000 calories per day. “It affects every aspect of my day-to-day life. It’s a progressive condition so my pain has gotten a lot worse over the last two years and I only started morphine this year for the first time. I’m so used to the condition that I don’t stop to think about it. I just get on with my life.”

​Naturally artistic and creative, Claudia became interested in make-up and cosmetics when she was 12. She began dabbling as a way to fit in with her schoolmates, but found that she really enjoyed it. She’s grateful that her condition hasn’t affected the skin on her face very much, which is unfortunately not the case for everyone with EB. With 80pc of her body under bandages, being able to paint her face gives Claudia artistic and personal fulfilment.

“Make-up has been a way of expressing myself and showing who I actually am to other people,” she says.

While her school pals went to adventure parks at weekends, Claudia had to abstain and couldn’t take part in physical activities. She had lots of friends at primary school, but they began moving away from sixth class onwards, forming cliques and becoming more conscious of peer groups.

“Age has a lot to do with it,” she says. “People found their niches and didn’t think twice about the little disabled girl who had no friends. My EB can be painful but I think loneliness is one of the worst things that I’ve ever encountered.”

It was very hard for Claudia to be on the sidelines looking in, but the experience taught her empathy for others on the fringes. It has helped to mould her into a very kind and compassionate person.

“I think I’ve grown up too quickly and am told I’m a little too wise for my age,” she says. “I think that was a big factor in why I didn’t have many friends, but I also feel it has helped me become a better person.”

Claudia had fabulous special needs assistants throughout school who provided her with friendship and companionship. Nonetheless, she was relieved when school ended and she was able to pursue her dream of becoming a make-up artist.

“I was so excited to go to college to do what I was passionate about, rather than sitting in school by myself all day. I learned so much and went out of my comfort zone and did things I didn’t think I’d actually enjoy, like special effects make-up. I learned about the theory of make-up and just tried to immerse myself in it as much as possible.”

While she was delighted to achieve her qualification, Claudia was particularly thrilled about making new friends who shared her passion. “I found my tribe and we still hang out,” she smiles.

Getting through the course naturally posed challenges, but Claudia was accompanied by a personal assistant while at college. She has no fingers on her left hand and shortened ones on her right, but she is – literally – a dab hand with the brushes and wands. The PA assisted her with trickier tasks like opening pots and palettes.

“I lost my fingers and toes because my bones grew too fast for my skin to catch up, and over time, the skin pulled my bones down and created a webbing, almost like a duck’s feet,” she explains, describing all that has happened to her in a manner devoid of self-pity.

Claudia, while able to stand, can no longer walk so gets around in an electric wheelchair. When she gets a job, she’ll be entitled to a PA once again.

She lives with her parents, Liz Collins and Gary Scanlon, and her beloved cocker spaniel Remi. Her parents have devoted themselves to ensuring that Claudia’s life is as normal and comfortable as possible.

Liz has worked tirelessly to create pathways for her daughter’s care, as there was nothing in place in terms of outside help when Claudia was born.

She has to have full bandage changes three times per week, which take around four hours. Liz fought for years to get nursing care to do the bandage changes, which were very hard for her emotionally. She eventually succeeded, but even now Claudia is only entitled to nine hours care per week. The nurses, Maria and Helen, whom Claudia adores, lance blisters and attend to infected wounds, which can be a very painful procedure.

“Some days are better than others and it also depends on how much medication I have,” she says. “I love Maria and Helen so much and we have a real friendship, rather than a nurse/patient relationship. It shouldn’t be left up to parents to do bandage changes because no parent wants to physically hurt their child unintentionally.

“When they inflict pain on us, we don’t understand why they’re doing that when we’re younger. We need more carers to come in and take that role from the parents.”

Liz still has to do a lot of care on a daily basis, and Claudia describes her as her “rock”. She orders bandages and medication and deals with the companies and agencies that provide nursing care and PAs. Mother and daughter are extremely close, and Claudia also pays tribute to her carpenter dad. “He’s a laugh,” she says. “He’s very funny. He’s a man of all trades and he has done everything in his power to try and make this house accessible for me.”

She’s also very close to her grandmother Carmel, who is also actively involved in her care.

Like any young adult, Claudia longs to branch out into the world, but is realistic about the role her parents play in her life.

“I wouldn’t be as well as I am without them and I can’t live without them,” she says. “We have a great relationship and they don’t hold me back and I’m grateful for what they do for me. I’ve been surrounded by so much love in my life.”

Claudia is grateful to Debra, the national charity supporting those living with EB. It relies on donations to fund itself and she was disappointed when the Government failed to prioritise funding for EB care in the recent Budget for the second year in a row. Debra had asked for €810,000 to be allocated in 2024 for mental health support, home nursing care and outreach care, but was denied.

“Not being included in the budgets was a big loss for us as a charity,” says Claudia. “We’re not being properly looked after as a community.”

Both Claudia and Debra are hugely appreciative of donations and community fundraising efforts that allow them to fill the gaps in care for people with EB, to campaign for better healthcare and try to find a cure for the condition. ​

​Claudia has great spirit and courage and won’t let the condition prevent her from forging ahead with her life. One of her dearest wishes is to do more travelling.

“I love Paris in particular and hope to live there one day,” she says. “I’d also really love to find some lovely guy who accepts me for who I am. That type of love is something I crave all the time.”

Claudia also harbours a deep longing to work part-time in a buzzy, youthful environment as, like any young person, she wants to spread her wings and forge an independent pathway for herself. She has worked hard to overcome the challenges that come with her condition, and would apply that same determination to succeed in the professional arena. All she needs is for someone to give her the chance.

“I’ve gone all this way through school and college to get my qualification and I don’t want it to go to waste,” she says. “I want to expand my passion for make-up and to work with more brands and create more content on Instagram, and I’d love to do some modelling one day.”

Fashion and beauty campaigns have become a lot more inclusive these days, featuring people with different skin and body types and abilities. Extending that inclusivity to the areas behind the camera is something that Claudia would love to see.

“I’d love employers to be open to making it work for me, because it’s important to be inclusive,” she says, smiling softly. “I’m talented and I’m just waiting for someone to have the courage to say, ‘Hey, I have an opportunity for you.’”