Skin disease EB is ongoing trial for parents and kids

There’s still no cure for EB (epidermolysis bullosa), writes Helen O’Callaghan.   

WHEN their first child was diagnosed with butterfly skin disease EB (epidermolysis bullosa), doctors told Mark Hyland and wife Geraldine there was a 25% chance any further children they had would also suffer from the condition.

But while Alison, now 13, has the severe form of the painful disease that causes skin layers and internal body linings to blister and wound at the slightest touch, she has a mild manifestation of it.

And, according to her dad, she just gets on with life.

“We saw Alison was coping, so we took the decision to have another child.”

Immediately after Erica, 7, was born, her Swords-based parents noticed a small piece of skin missing from one foot. Like Alison, Erica has the severe form of EB, but again the mild manifestation.

“In the worst cases of EB, children have no collagen in their skin. Our girls have 50% collagen, so their skin does rebuild — it’s just a slower process,” explains Mark.

That’s not to say life’s easy for his daughters. The condition mainly affects their extremities — feet, legs and elbows are bandaged. Erica wears pads on arms, legs and feet to protect her from everyday knocks.

“Both girls have lost pretty much all their fingernails and toenails over the years — these won’t come back. Their condition can be very painful, depending on wound size and where it is. Depending on size of a blister, you either burst it or leave it. Bursting it can result in fierce pain.”

At school, Erica has a SNA — Alison did too in primary school — mainly to help them in the playground if they fell.

“To look at Alison, you couldn’t tell she has a skin condition unless you look closely at her fingers. She just gets on with things. If she gets a cut at school, she waits until she’s home to sort it, rather than draw attention to it in the classroom. Erica has inherited that trait of just getting on with it too.”

As the girls grow older, their skin will become more scarred. Their parents worry about how this will impact.

“How will they react when others look at them?” wonders Mark.

With no cure, it’s a matter of managing their condition, which both girls seem to do admirably.

Irish skin charity Debra Ireland hosts a Firewalk in Dublin’s Stillorgan Park Hotel today.

Individuals/groups will take a short walk over three meters of wood embers burning at 800 degrees. Participants pay €50 registration fee and raise €200 for Debra Ireland

Top tips

Be age appropriate; a seven-year-old won’t be motivated by a sticker; a three-year-old will.

Don’t think ‘elaborate’ — rewards need only be small to work.

If you’re trying to establish a routine, make the last step a reward: ‘get into your pyjamas, brush your teeth and then story time’.

Be consistent – if you say you’re going to give them something, do so.