Living with EB: Debra Ireland ambassadors share their stories

9 Feb 2018

From left: Emma Fogarty and Liz Collins of Debra Ireland speaking at Inspirefest 2017. Image: Connor McKenna Photography

Liz Collins and Emma Fogarty of Inspirefest 2017 charity partner, Debra Ireland, took to the stage to talk about the realities of living with EB.

EB, or epidermolysis bullosa, is a genetic skin condition, which is often described as ‘the worst disease you’ve never heard of’. It is classified as a rare disease, with just one in 18,000 babies born in Ireland affected. More than 500,000 people around the world live with the disease.

A debilitating disease

In mild cases, only the skin is affected but more severe forms can affect the mouth, internal linings of the body and even the teeth. The skin’s natural proteins break down, and slight touch can cause extreme pain, sores and blistering.

Debra Ireland is the national charity dedicated to those living with the disease and was chosen as the Inspirefest charity partner for 2017. Patient ambassador Emma Fogarty and family patient ambassador Liz Collins, took to the stage at the Bord Gáis Energy Theatre to tell their stories of resilience and hope.

Dealing with the challenges of EB

Collins is mother to teenager Claudia, who she described as your typical teenage girl, “full of attitude”, who lives with chronic pain and three-and-a-half-hour daily bandage changes.

Collins voiced her hopes that one day, thanks to the “beautiful minds” of researchers, EB would be “eradicated from this world”. She spoke of her fierce admiration for her daughter and her desire to see more people aware of what EB is and the devastating effects it has on sufferers.

Claudia is an endless source of strength for Collins, who told a rapt audience: “She inspires me, she’s the reason I get up every single day.”

Triumph over adversity

Patient ambassador Emma Fogarty spoke about living with recessive dystrophic EB, the worst form of the condition. The Ireland she was born into was a “country that had no idea what EB was”. Her terrified first-time parents were devastated when doctors told them she “wouldn’t last a week”.

Against all odds, she triumphed, going through school, sitting her Junior and Leaving Certificate and moving out of home at 18. She made her way to Limerick, where she studied business and marketing before she moved to Dublin to work in banking for a number of years. Everything she did was a fight: “Nothing came easy to me.”

Fogarty discussed how she takes her role as patient ambassador very seriously and considers the role a privilege. The work Debra does for EB sufferers and their families is invaluable and the sense of community it provides is a real lifeline: “It isn’t just a charity, we’re a family.”

In existence since 1988, Debra Ireland does all it can for those living with this grueling disease.

In March 2018, a group of adventurers will go on a demanding Arctic trek to raise money for the charity, including Inspirefest founder and Silicon Republic CEO, Ann O’Dea. The funds will go towards a new EB mobile nurse, who will visit families at home. By bringing hospital expertise to the homes of patients, they will also be able to train local caregivers to give people with EB a better quality of life.

Ellen Tannam was a journalist with Silicon Republic, covering all manner of business and tech subjects