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Being Emma

Living My Best Life with Butterfly Skin

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Being Emma

By: Emma Fogarty
Narrated by: Evanna Lynch
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About this listen

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.

©2025 Emma Fogarty (P)2025 W.F. Howes Ltd People with Disabilities Resilience
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Very thought provoking and emotional listen as a disabled woman I could relate with lots of what Emma spoke about with such clarity and real lived experience came through big time! Her passion to live life to highest level was so evident. I have a friend who’s nephew lived with EB after listening to the book I feel i have a better understanding of the challenges associated with living with it, highly recommend this truly amazing book

Powerful & Honesty

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This books gives a eye-opening insight into the daily struggles of a child growing up, with every day challenges, all on top of life altering skin disease from birth. I didn’t realize how cruel EB is, and why the life expectancy is so low. This book walks you through the day to day of Emma’s struggles, adventures, and strength throughout. Amazing read. Highly recommend.

Incredible Insights into the surprising life of Emma

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