BEING EMMA
Living My Best Life with Butterfly Skin
Emma Fogarty
Foreword by 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.
Born with epidermolysis bullosa, a rare and excruciatingly painful condition that makes her skin as fragile as butterfly wings, Emma Fogarty was not expected to survive infancy. Today, at forty-one years of age, she is the oldest living Irish person with her form of the condition, continuing to defy the odds with extraordinary strength, resilience and remarkable achievements.
However, every accomplishment Emma makes comes with its own set of obstacles. EB is a cruel disease which causes her skin to blister and tear at the slightest touch. 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. Emma’s daily life is a battle against debilitating pain, yet she embraces every moment with fierce positivity and determination. In 2024, she took part in the Dublin Marathon alongside her close friend Colin Farrell to mark her fortieth birthday, raising over €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.
Paperback • €18.99|£17.99 • 280 pages • 234mm x 153mm • 9781785375682
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| About The Author Emma Fogarty lives in Laois and is one of just 300 Irish sufferers of epidermolysis bullosa, a painful disease which makes her skin as fragile as a butterfly’s wing. At forty-one, she is the oldest living Irish person with the condition. As an ambassador for DEBRA Ireland, she took part in the Dublin Marathon alongside her close friend Colin Farrell, raising almost €1 million for the organisation. |
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