People living with butterfly skin syndrome or epidermolysis bullosa (EB) have called on Minister for Health Stephen Donnelly to meet with them as they campaign for funding to treat the condition.
EB affects approximately 300 people in Ireland and is a genetic condition where the skin is so fragile that even the slightest touch can cause it to tear and blister.
The butterfly skin charity, Debra, has called on the government to include funding for treatment of the condition in the next budget saying people living with the condition should not have to fight for care.
Joanna Joyce, Head of Advocacy with Debra said, “Bearing in mind the lifelong pain, physical and mental trauma that people go through with EB, what we are looking for is a tiny fraction of the current €23 billion health budget,”
“For the second year in a row, we’re asking the government for €810,000 in Budget 2024 – just 0.003% of the €23 billion health budget – less than the cost of 2 coffees a day per person with EB,”
People living with severe forms of the condition often have to endure painful dressing changes on a daily basis to prevent infection from developing in the open wounds caused by the extremely fragile skin.
People with epidermolysis bullosa (EB) shouldn't have to fight for basic care.
For the second year in a row, we're asking Government for €810,000 in #Budget2024 – just 0.003% of the €23 billion health budget – less than the cost of 2 coffees a day per person with EB.
Join… pic.twitter.com/CcfFSBhokV
— Debra – The Butterfly Skin Charity (@debraireland) June 28, 2023
It was reported that the government has lost approximately 150 million euro on abandoned transport projects
The Public Accounts Committee (PAC) heard that to the end of March 2023 some 300m had been spent on a Dublin metro-link project although physical construction is yet to begin.
TD Chris Andrews recently met with campaigner and EB sufferer Emma Fogarty outside the Dáil, calling on Stephen Donnelly to meet with Debra.
For less than the price of 2 coffees a day per person with EB, the Government can help the approx. 300 people in Ireland living with EB in #Budget2024. @DonnellyStephen will you meet with @debraireland? A small act that can have a big impact on everyone with butterfly skin. pic.twitter.com/ya88pNpcAA
— Chris Andrews TD #stopthegenocide (@chrisandrews64) June 30, 2023
The charity says the €810,000 in support it is campaigning for will help with mental health support, outreach care, and home care for those living with the condition..
This it says would make “an immediate positive impact” and those suffering from EB.