A new campaign to raise awareness of the serious skin disease, epidermmolysis bullosa (EB), has been launched.

EB is sometimes referred to as the ‘butterfly skin' disease. It is a painful genetic condition which causes the skin layers and internal body linings to blister and wound at even the slightest touch. Some 300 people in Ireland are affected.

This week is National EB Awareness Week and Debra Ireland, the charity that provides support to those affected, has launched a ‘Butterfly Effect' campaign. This aims to create a butterfly effect on social media to raise awareness and funds.

"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," explained Rachel Connors, mother to Casey (5) who has a severe form of EB.

Casey, who has just started school at St Ronan's National School in Clondalkin, has to have 80% of her body bandaged to help protect her as the condition affects every part of her body with constant blisters and sores.

Her bandages need to be changed every two days and this can be a very painful process that takes several hours.

"Casey can't chew food because blisters on her throat make it difficult to swallow and she has to be on three different types of medication every day for pain relief. Bandage days can be excruciating and on those days we have to give Casey extra pain medication to help her cope," Rachel explained.

She said that Casey can be injured if somebody even brushes against her.

"She has limited use of her hands so her SNA helps her to open her books and organise her things. The school has never had a child with her condition but they have been very helpful in organising things so Casey can attend," Rachel noted.

Debra Ireland provides day-to-day help and support for EB patients and their families. It also funds research programmes in an effort to find better treatments and a possible cure for the condition.

"With EB, every little bit can hurt but a little Debra butterfly can help so much, so please pick one up at any Applegreen, service station," said Debra Ireland spokesperson, Judith Gilsenan.

EB Awareness Week runs from October 23-29. For more information on Debra Ireland, click here

*Pictured is Casey Connors who has EB