Description
Born with Epidermolysis Bullosa (EB), 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 41 years of age, she is the oldest living Irish person with 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 40th 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.
Praise for Being Emma
‘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
‘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
‘This book encapsulates what people with EB and their families go through every day. Emma is the oldest living patient with EB so for her to put down on paper what she goes through must have been tough but she is tough.’ – Johnny Sexton
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 41, 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. This is her story.
