Being Emma: Living My Best Life With Butterfly Skin
About this ebook
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.
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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 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.
