Being Emma: Living My Best Life with Butterfly Skin

Author:   Emma Fogarty
Publisher:   Merrion Press
ISBN:  

9781785375682


Pages:   280
Publication Date:   26 September 2025
Format:   Paperback
Availability:   In Print   Availability explained
This item will be ordered in for you from one of our suppliers. Upon receipt, we will promptly dispatch it out to you. For in store availability, please contact us.

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Being Emma: Living My Best Life with Butterfly Skin


Overview

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.

Full Product Details

Author:   Emma Fogarty
Publisher:   Merrion Press
Imprint:   Merrion Press
ISBN:  

9781785375682


ISBN 10:   1785375687
Pages:   280
Publication Date:   26 September 2025
Audience:   General/trade ,  General
Format:   Paperback
Publisher's Status:   Active
Availability:   In Print   Availability explained
This item will be ordered in for you from one of our suppliers. Upon receipt, we will promptly dispatch it out to you. For in store availability, please contact us.

Table of Contents

Reviews

'A beacon of courage and positivity' - Irish Daily Mail


Author Information

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.

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