Parents of children with the rare and painful ‘butterfly skin’ disease have made an emotional appeal to TDs and senators to provide more nurses to help them in the excruciating process of bandaging their children.
EB is a painful and rare genetic condition that causes the skin layers and internal body linings to blister and wound at the slightest touch, due to a fault in the genes holding the skin layers together.
At a meeting with Oireachtas representatives today (October 25) Cork parent Rachel Reid explained how her 20-month-old daughter, Alana, who has the severe form of EB, screams in pain while going through her bandaging and bathing process every second day, which a necessary preventative measure to ward off 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.
“We have had nurses who have buckled from the experience, but we have no choice, we have to do it”.
She continued: “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?”
The delegation included representatives from Debra Ireland the charity that provides hope and support for the 300 people in Ireland living with ‘butterfly skin’ EB.
The Oireachtas meeting heard how crucial it is for the patients that a HSE nurse, currently in EB training, be made permanent and that two additional nurses are also appointed.
Fiona Aherne of Debra Ireland highlighted the seriousness of the disease: “In severe cases no part of the body remains untouched, some babies don’t survive and in others EB reduces lifespan dramatically.
“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”.
She claimed that there are patients in almost every county, stating that four mire babies had been born with severe EB over the last 14 months.
Debra Ireland told the Dáil meeting that there are currently 50 children attending EB services in Dublin’s Crumlin Hospital and over 100 adults attending the national EB service at St James Hospital.
This week (Oct 23-29) is National EB Awareness Week and Debra Ireland is attempting to raise awareness and funds on social media.
“We are asking people to help by picking up a Debra Ireland Butterfly Tattoo at any Applegreen service station and texting the word BUTTERFLY to 50300 to make a €4 donation,” said Fiona.
“We are also asking people to spread the word by taking a selfie of their tattoo and sharing it on social media to create awareness and be part of the #butterflyeffect”.