Fragile Skin, Unbreakable Spirit
Emma Fogarty was born with a condition so rare her skin is as fragile as a butterfly’s wings. Despite countless obstacles-blisters, fused fingers and days of agonising pain-she became the oldest Irish person living with Epidermolysis Bullosa and an inspiration for all. Being Emma is her life on fire.
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Being Emma: Living My Best Life With Butterfly Skin
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Fragile Skin, Unbreakable Spirit
Emma Fogarty was born with a condition so rare her skin is as fragile as a butterfly’s wings. Despite countless obstacles-blisters, fused fingers and days of agonising pain-she became the oldest Irish person living with Epidermolysis Bullosa and an inspiration for all. Being Emma is her life on fire.
- Book Synopsis
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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.
Every accomplishment 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 must 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.
- 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.
- Product Details
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- ISBN
- 9781785375682
- Format
- Paperback
- Publisher
- Merrion Press, (26 September 2025)
- Number of Pages
- 224
- Language
- English
- Dimensions
- 234 x 153 mm
- Categories: