THE oldest living Irish woman with an extremely rare and painful skin condition recently released an autobiography with a foreword written by Colin Farrell.
By Dearbhla Parry
Emma Fogarty is a writer, activist, and advocate from Laois living with Recessive Dystrophic Epidermolysis Bullosa (EB). When Emma was born with EB, she was not expected to survive infancy. However, at age 41, she is the oldest living Irish person with that form of the condition. Despite the immense difficulties in her everyday life, Emma continues to defy the odds with her resilience and recounts her story in her first book and autobiography, ‘Being Emma’.
EB is an excruciating condition affecting 1 in 50,000 people globally, which leaves the skin as delicate as a butterfly’s wing, hence its nickname ‘Butterfly Skin’. Living with EB means daily bandaging, constant wound care, and a lifetime of managing pain, risk of infection, and complications. There is no cure. Emma can no longer walk and lost the use of her fingers when they fused together. Her bandages need to be changed every two days, an agonising process which takes hours. Despite this, Emma embraces every moment with fierce positivity to obtain remarkable achievements, including taking part in the 2024 Dublin Marathon alongside her close friend Colin Farrell to raise almost €1 million for Debra Ireland, a charity dedicated to transforming the lives of people living with EB and those caring for or bereaved by someone with EB.
In Emma’s book, she is asking readers to get to know her as a person, not just as the “sick girl”. She explained, “There are so many other parts of me that people don’t even know about. That’s why the book’s called ‘Being Emma’, because it is just about being me, a human, a woman, a 40 years of age person.”
With every line of her story, she aims to give readers a sense of hope for people with disabilities and an understanding of what EB is. “Yes, I’ve had hard times, but I have also had great times. I moved out of home at 18 to go to college in Limerick, I was four years there, and then I moved to Dublin and spent three years in Dublin working, and now I’m Patient Investor of Debra Ireland,” said Emma. “If I can do all that and deal with the obstacles, so can other people, not just with EB, but with any disability.”
Irish actor and three-time Golden Globe winner Colin Farrell offered to write the foreword for Emma’s book in light of their 15 years of friendship. The two met during the Dublin Women’s Mini Marathon for Debra Ireland when Colin Farrell was asked to have dinner with the five women who raised the most money, one of them being Emma. “We just got on really well, and we swapped emails,” Emma told The Clare Echo. What started out as dinner and two to three emails a year became text messages, leading to a deep and understanding friendship. She added, “I’ve always said I want to be an open book, and I just told him about my life. I didn’t hide the things that people don’t want to hear about. I was just totally honest with him.” Delighted and emotional with the kind words he wrote for the foreword, Emma said, “He’s just an amazing man that can put feelings into words really well… I’m very proud of him for doing that for me.”
“Emma is one of the greatest teachers we have and if the reader can feel even an ounce of the wonder, the sorrow, the strength and hope that I have felt in knowing her, then they will walk away with a life enriched for the time spent in the company of this amazing woman,” wrote Colin Farrell in ‘Being Emma’.
“It was an emotional rollercoaster of an experience”, said Emma about the writing process. In her book, she recounts personal stories of being bullied and the difficult parts of her life. She said, “There’s so many stories that I have locked in a little box away and I put them away in the back of my brain.” However, as always, Emma chose to look on the bright side. “It certainly was hard, but there was something therapeutic about putting it down on paper. It was almost like handing it away to somebody else to say, ‘Here’s my story, have a read of it’.”
“Fight for your dreams. Live the way you want to live your life,” Emma tells others living with EB. She advises people with the condition not to shy away from what they want and to always try. She said, “EB will not define who you are. You define who you are.”
“My mother tells me that when I was born the room fell deathly silent. She knew something was wrong, but she didn’t know what. Neither did the nurses, nor the doctor they rushed to find. That silence didn’t last because I began to cry, and my mother tells me I didn’t stop at all. Because I was born in terrible pain,” reads the prologue of Emma’s autobiography.
‘Being Emma’ was released at the end of September and every copy bought from Dubray Books gives €2 to Debra Ireland.
