Today, I’m asking you to help those who suffer from EB, a terrible, painful, incurable illness which affects so many.

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Claudia Scanlan suffers form EB. Heroic is one word to describe this girl.

With a bit of luck, I’ll be 67 on August 5.

That’s something of a miracle, bearing in mind the various health issues I’ve had.

And yes I’m on oxygen 14 hours a day and breathing is difficult and I can’t do lots of things I’d love to do and… …and well, I’m the luckiest man alive.

Because I’ve had more than 14 years of pure joy with Connie and our beautiful daughter Charlotte. I couldn’t have asked for more. But I’m going to!

So for my birthday, I’m going to try and raise €500 fo DEBRA. What’s DEBRA?

DEBRA Ireland was set up in 1988 by families living with the painful, genetic skin condition epidermolysis bullosa (EB) who had no support and nowhere to turn. And what is EB? • Epidermolysis bullosa (EB) is a distressing and painful genetic skin condition that causes the skin layers and internal body linings to separate. • It causes a breakdown in the natural proteins that hold the skin together. The slightest touch can cause severe pain, blistering and sores. • The skin blisters have to be lanced and dressed every day and this can take up to three hours. • EB has been described by a Consultant Dermatologist in Our Lady’s Children’s Hospital as “easily the most debilitating and devastating disease I have ever seen.” • EB is currently incurable.

I sometimes see Claudia Scanlon (that’s her in the photograph) at St Louis High School in Rathmines. This is a small part of a piece about Claudia that was in the Irish Times recently.

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The teenager is one of the estimated one in every 18,000 babies born in Ireland to be affected by EB – and one of more than 500,000 people worldwide with the condition.

As a result, says her mother Liz, since birth Claudia has led “a very isolated life” at the family home in Terenure, a life Liz describes as “a one-man show. “If someone banged into her, her skin would shear off. People are not always that open to her. She struggles for friendship but she has the same wants and desires as any 16-year-old,” observes Liz.

However, one thing that Claudia Scanlon does not lack is courage. An only child, the teenager is a pupil of St Louis School, Rathmines now closed as part of the restrictions around the Covid-19 pandemic. For years she has routinely travelled to school by bus on her own during term, and attended her classes with the support of a special needs assistant.

However, she has always had to be careful – in first year, another student accidentally walked onto the back of her shoe and she fell. The rough contact with the ground severely damaged the skin on her hands, and the soles of her feet were also badly wounded. EB, Claudia says, affects virtually every aspect of her life, from moving around to social interaction.

“I cannot trip or fall because what I’d get would not be a graze; it would result in wounds all over my body that would take up to a month to heal. I’ve grown up with it but it can still be tough,” she says. *** So please. A fiver, a tenner anything all. I’m lucky and you probably are too.

So this birthday, I want to celebrate my luck, by helping someone who hasn’t had my good fortune. Thanks

(I put this piece on my Facebook page yesterday. If you’d like to donate to DEBRA, you can do so at https://www.facebook.com/donate/297478628063606/10223796668406977/ or directly to DEBRA at https://debraireland.org/fundraising/donate/ )

 

 

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