The parents of children with a rare and painful skin disease have appealed to members of the Oireachtas for more nurses to help them with the distressing process of bandaging their children.

Epidermolysis bullosa (EB) is an extremely painful genetic condition that causes the layers of the skin and internal body linings to blister and wound at the slightest touch. It is often referred to as the ‘butterfly skin' disease and affects 300 people in Ireland.

Those with severe forms of the disease have to be carefully bandaged every second day and this can take several hours.

This week is National EB Awareness Week and as part of this event, parents attended an Oireachtas meeting to explain just how distressing the bandaging process can be.

Rachel Reid from Cork explained what is involved with looking after her 20-month-old daughter, Alana, who has the severe form of EB.

"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.

"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?" asked Ms Reid.

The Oireachtas meeting was told by representatives of the EB charity, Debra Ireland, that there is currently a nurse who is in EB training. They said that it is vital she is made permanent and that two other nurses are appointed.

"EB is a rare genetic condition caused by a fault in the genes holding the skin layers together and it can vary from debilitating to devastating. 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. There are patients in almost every county and in the last 14 months, four babies have been born with severe EB," explained Fiona Aherne of Debra Ireland.

However, she emphasised that one nurse is ‘not enough'.

"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," Ms Aherne said.

She noted that there are currently 50 children attending EB services in Our Lady's Children's Hospital in Crumlin and over 100 adults attending the national EB service at St James's Hospital in Dublin.

As part of National EB Awareness Week, which runs until October 29, members of the public are being asked to create a butterfly effect on social media to raise funds and awareness.

"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. 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," Ms Aherne said.

For more information on Debra Ireland, click here

*Pictured is Alana Reid-Sochan, who has severe EB