Ray D’Arcy to launch Being Emma – by Emma Fogarty 

Read about Emma’s incredible life to date & her unbreakable spirit

‘Imagine that just being is painful…that a hug can cause a wound, that wearing clothes can tear your skin.’ This is the daily reality for Emma Fogarty. At forty-one, Emma is the longest-living Irish person with Epidermolysis Bullosa (EB), a rare and excruciating condition that leaves the skin as delicate as wet tissue paper. Living with EB means daily bandaging, constant wound care and a lifetime of managing pain, risk of infection and complications. There is no cure. Despite the immense difficulties Emma faces in everyday life, she continues to defy the odds with her extraordinary strength and resilience. Being Emma – introduced by her great friend and advocate Colin Farrell – is a raw, powerful, and deeply moving autobiography like no other.

BEING EMMA

Living My Best Life with Butterfly Skin

Emma Fogarty

Foreword by Colin Farrell

‘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.’ – Colin Farrell

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.

Epidermolysis Bullosa (EB), commonly known as butterfly skin, is an extremely rare and excruciatingly painful condition that affects 1 in 50,000 people globally.For sufferers such as Emma Fogarty, it makes their skin as fragile as a butterfly’s wing.

When Emma was born with EB she was not expected to survive infancy. Today, she is the oldest living Irish person with the condition, continuing to defy the odds with strength, resilience and remarkable achievements.

However, every accomplishment Emma makes comes with its own set of obstacles. She can no longer walk, and she 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 momentwith fierce positivity and determination. In 2024, she took part in the Dublin Marathon alongside her close friend Colin Farrell to mark her 40th birthday, raising almost €1 million for DEBRA Ireland.

Emma’s skin may be fragile, but her spirit is unbreakable – shattering every expectation and lighting the way for everyone who dares to dream beyond their circumstances.

‘Emma Fogarty is a truly exceptional person. Her bravery and positive outlook in the face of enormous challenges are monumental. Her life story is one of constant pain, enduring love and resilience beyond comprehension.’ – Ray D’Arcy

‘I met Emma for the first time about 15 years ago. I hadn’t heard about EB until that day. Since then I have been an ambassador for Debra Ireland. Watching the pain that EB patients go through is heartbreaking. Emma has displayed courage and bravery which has been an inspiration to me during my career but also in my life. We have stayed in contact over the years and tried to raise awareness of EB as much as we can. This book encapsulates what people with EB go througheveryday and also what their families go through everyday. Emma is the oldest living patient withEB, so for her to put down on paper what she goes through must have been tough, but she is tough.’ – Johnny Sexton