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'This is no life, Mam': Meet the girl whose skin blisters at touch

“This is no life, Mam.”

These are the poignant words of Claudia Scanlon, a 10-year-old girl who is living with Epidermolysis Bullosa (EB), a very rare genetic condition which causes the skin to blister at the slightest touch.

And even  at her tender young age, she has been through more pain and suffering than some of us could even begin to imagine experiencing in a lifetime.

The chatty little girl spends hours every day taking her medication and having her dressings changed, and simple tasks like walking or using the toilet can leave her in great pain.

The incurable condition which has taken a hold of her life affects one in every 20,000 children, and the oldest person in Ireland living with EB is a 30-year-old woman.

Claudia told the Irish Independent that she gets up every morning at 7am to change her dressings before school, and regularly has to visit hospital. After her most recent visit, she told her mother Liz that she “was terrified”, adding heartbreakingly that “this is no life”.

However, despite the great difficulties the brave young girl faces, her proud mother describes her as “amazing” and said that she is just like any other child who loves the colour pink and wants “to dance, jump and play”.

“The pain does bother her, but she was born in pain, so her pain threshold is stronger than you or I,” she explained.

“She’s wrapped head to toe in bandages like someone who has come back from war. But she hasn’t, the only war she is at is with her body.

“There is no cure, she will never produce collage seven, which is missing from her skin.  Claudia’s toes are gone, her hands are contracting.  She’s chronic anaemia and she has osteoporosis.

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“Her toes have joined together, they have fused together so they look like stumps, and her hands will eventually as well.  The fingers and toes are there, but they are encased in skin.  The web spacing in between is gone,” Liz added.

“She was in hospital last weekend, she was sick.  And I thought on Monday that she was a little out of sorts, she very rarely cries.  I just said to her ‘are you okay?’, and she said ‘Mum I was terrified’, and she said ‘this is no life Mam’.”

Despite the constant battle that Claudia faces, she is appealing with the country to support the EB World Awareness Day which is being marked today.

DEBRA Ireland- an organisation offering supports and services to the people living with EB and their families- are asking people to donate €4 by texting ‘Butterfly’ to 50300, or to raise awareness by wearing  the specially designed  butterfly tattoo and posting a selfie online.

For more information visit debraireland.org.

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