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Being Emma: Living My Best Life with Butterfly Skin
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.
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.
224 pages, Paperback
Published December 1, 2025
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Displaying 1 - 2 of 2 reviews
April 1, 2026
I read this slowly—it was so beautiful and human, I wanted to savour it.
Emma Fogarty’s story is one that could so easily be defined by pain, limitation, and impossibility. And yet, here she is—defying every expectation, not just by living, but by fully embracing life.
What stayed with me most was the quiet honesty in how her life is shared. The realities of living with constant pain are not softened, and yet they are held alongside moments of humour, warmth, and deep connection. It’s this balance that makes the book feel so intimate—never overwhelming, but always deeply affecting.
This is not a story about suffering. It’s a story about resilience in its truest form. Not the loud, triumphant kind, but the steady, everyday courage it takes to keep going, to keep choosing joy where you can, and to hold onto hope even when it would be easier not to.
There’s also something incredibly grounding about Emma’s voice. She doesn’t ask for pity or admiration, but instead invites you to simply witness—to understand, to feel, and to reflect. In doing so, she reshapes how we think about strength, showing that it can be gentle, vulnerable, and persistent all at once.
This is a book that shifts your perspective. It quietly asks you to reconsider what strength looks like, what it means to endure, and how much beauty can exist even in the most painful circumstances.
I didn’t want to rush through it. It deserved time, attention, and reflection. Long after finishing, it stays with you—a reminder of just how unbreakable the human spirit can be.
Reading this felt like having a cup of tea with a dear friend—one who trusts you with the truth of their life, and in doing so, changes how you see your own.
Emma Fogarty’s story is one that could so easily be defined by pain, limitation, and impossibility. And yet, here she is—defying every expectation, not just by living, but by fully embracing life.
What stayed with me most was the quiet honesty in how her life is shared. The realities of living with constant pain are not softened, and yet they are held alongside moments of humour, warmth, and deep connection. It’s this balance that makes the book feel so intimate—never overwhelming, but always deeply affecting.
This is not a story about suffering. It’s a story about resilience in its truest form. Not the loud, triumphant kind, but the steady, everyday courage it takes to keep going, to keep choosing joy where you can, and to hold onto hope even when it would be easier not to.
There’s also something incredibly grounding about Emma’s voice. She doesn’t ask for pity or admiration, but instead invites you to simply witness—to understand, to feel, and to reflect. In doing so, she reshapes how we think about strength, showing that it can be gentle, vulnerable, and persistent all at once.
This is a book that shifts your perspective. It quietly asks you to reconsider what strength looks like, what it means to endure, and how much beauty can exist even in the most painful circumstances.
I didn’t want to rush through it. It deserved time, attention, and reflection. Long after finishing, it stays with you—a reminder of just how unbreakable the human spirit can be.
Reading this felt like having a cup of tea with a dear friend—one who trusts you with the truth of their life, and in doing so, changes how you see your own.
January 22, 2026
Being Emma: Living My Best Life with Butterfly Skin by Emma Fogarty is an extraordinarily powerful and inspiring memoir that stays with you long after the final page. With honesty, warmth, and remarkable courage, Emma invites readers into her world living with Epidermolysis Bullosa (EB), a rare condition that causes constant pain and immense physical challenges.
What makes this book so compelling is Emma’s unwavering positivity in the face of relentless adversity. Despite daily battles with pain, limited mobility, and exhausting medical routines, she refuses to let EB define or limit her spirit. Her story is not just about survival, but about truly living embracing friendships, celebrating milestones, and pursuing meaningful goals against all odds.
This memoir is a must, read for anyone seeking inspiration, perspective, and hope. Being Emma is a heartfelt reminder that even the most fragile bodies can carry the strongest spirits, and that life, when lived with courage and purpose, can be truly extraordinary.
What makes this book so compelling is Emma’s unwavering positivity in the face of relentless adversity. Despite daily battles with pain, limited mobility, and exhausting medical routines, she refuses to let EB define or limit her spirit. Her story is not just about survival, but about truly living embracing friendships, celebrating milestones, and pursuing meaningful goals against all odds.
This memoir is a must, read for anyone seeking inspiration, perspective, and hope. Being Emma is a heartfelt reminder that even the most fragile bodies can carry the strongest spirits, and that life, when lived with courage and purpose, can be truly extraordinary.
Displaying 1 - 2 of 2 reviews