Irish woman (21) with rare disease on the 'horrible silence' when she enters a room

A 21-one-year-old woman with a rare skin condition has said she never wants to see another child battle the same loneliness and isolation she did.

Claudia Scanlon, from Terenure in Dublin, has a severe form of epidermolysis bullosa (EB), the genetic illness that causes the skin to blister at the slightest touch.

Now the make-up artist is urging the public to help a charity’s vital work ensuring that other children battling it, have normal childhoods.

“I don’t want any child living with EB to experience the loneliness and isolation I did,” said Claudia, who previously appeared on the Late Late Show alongside rugby star Johnny Sexton, to raise awareness about EB.

“Secondary school was a particularly tough time because, like most teenagers, all I wanted to do was fit in.

“The other kids didn’t understand my condition and I spent most lunchtimes alone or with my SNA.

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“Thankfully, schoolchildren with EB nowadays have more support - Debra (the national charity supporting those with EB) proactively works with the children to provide books and other resources to help their classmates understand the condition.”

Claudia highlighted that donations also contribute to vital scientific research, which helps to produce and improve treatment and progress towards a cure.

“People with my type of EB are seven times more likely than the average person to be diagnosed with skin cancer,” she said.

“At just 13, I had my first biopsy. Now that I’m 21, I know it has to be a regular thing.

“I have hope for a brighter future - every scientific breakthrough, every new treatment and every new drug offers a glimpse of a better life.

“My greatest wish is for a cure for EB so that no one else has to suffer with this painful condition.”

80% of Claudia’s body is covered in open wounds and she endures excruciating daily bandaging sessions.

“There’s no point in sugar coating it - living with EB is hard, it’s painful and it’s an uphill battle every day.

“Just doing the ordinary things others may take for granted - like getting out of bed, leaving the house or travelling to work - takes so much energy and determination. I’m sometimes exhausted before I’ve even left home.

“But the pain isn’t just physical, it has a huge impact on your mental health.

“The curious side glances, the hushed conversations or the horrible silence that falls over a room when you enter.

“I’m not sure how I would have coped without the emotional support from the Debra Family Support Team and the psychological support and counselling I received through them.”

Claudia turned her passion into a profession and now works as a make-up artist.

“Of all the careers I could have chosen, of course I chose one where I use my hands every day,” she said.

“I wanted to work, so Debra arranged wheelchair-accessible transport to and from my workplace.

“The girls I work with are incredible - it honestly feels like I’ve finally found my tribe.”

To support Claudia and Debra’s work, visit www.debra.ie