THE PARENTS OF Irish children suffering from a rare and incredibly painful skin condition have appealed to the State to help them manage the process of caring for their kids.
EB (epidermolysis bullosa), commonly known as butterfly skin or butterfly disease, is a painful genetic condition which causes the skin’s various layers to blister or break at the slightest touch.
Cases of the condition range in severity from mild to fatal.
Yesterday, Cork mother Rachel Reid told a meeting of elected representatives that her 20-month-old daughter Alana (who has the most severe form of the condition), screams in pain while going through the process, carried out every two days, to bathe and bandage her skin to protect it from infection.
“It takes three of us, three hours to do it and there are days Alana is screaming so much we have all been in tears,” Rachel said.
We have had nurses who have buckled from the experience, but we have no choice, we have to do it.
EB is relentless, the symptoms are life-limiting, life altering and just generally horrific. How can we, as ordinary parents with no medical background, look after tiny babies and children with such complex needs?
Rachel, along with Debra Ireland (the organisation established in 1988 to provide patient support and to drive research into treatments and a cure for EB) are calling for a HSE nurse, currently in EB training, to be made permanent, and for two further appointments to be made.
This week is National EB Awareness Week. 300 people in Ireland are currently living with ‘butterfly skin’.
“In severe cases (of EB) no part of the body remains untouched, some babies don’t survive and in others EB reduces lifespan dramatically, says Fiona Aherne of Debra Ireland.
It is essential that the outreach nurse currently in EB training is made permanent so this expertise is not lost to the EB community after three years.
In the last 14 months four babies have been born in Ireland with severe EB.
Currently there are 50 children attending EB services in Dublin’s Crumlin Hospital, with a further over 100 adults attending the national EB service at St James Hospital.
“One nurse is not enough,” says Aherne.
We need the HSE to make the current outreach nurse permanent as well as appointing two additional outreach nurses to help meet the overwhelming needs of families with EB.
This week is National EB Awareness Week. You can support the awareness drive by buying a Debra Ireland Butterfly Tattoo at any Applegreen service station, or by texting BUTTERFLY to 50300 to make a €4 donation.
Debra is also encouraging people to take a selfie of their tattoo and share it on social media with the hashtag #butterflyeffect to further create awareness.
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