What is Epidermolysis Bullosa (EB) and how does it affect Emma Fogarty?

EB is a rare genetic condition causing fragile skin to tear easily. Emma Fogarty lives with the most severe form, experiencing constant wounds and pain.

How did Emma Fogarty and Colin Farrell become friends?

Emma Fogarty and Colin Farrell met at a charity event in 2010 and formed a close bond, with Farrell becoming a vocal advocate for EB awareness.

What is the main message of Emma Fogarty's memoir, 'Being Emma'?

Emma's memoir shares her life of pain and resilience, aiming to educate about EB and inspire hope in readers facing challenges.

Home / Health / Butterfly Child's Defiant Triumph Over Rare Disease

Butterfly Child's Defiant Triumph Over Rare Disease

5 Jan

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Summary

Emma Fogarty lives with severe Epidermolysis Bullosa, a painful skin condition.
Actor Colin Farrell has become a close friend and advocate for Emma.
Her memoir details a life of pain, resilience, and friendship.

Butterfly Child's Defiant Triumph Over Rare Disease

Emma Fogarty, 41, is one of the oldest living individuals with Epidermolysis Bullosa (EB), a rare genetic disorder that causes skin to tear easily. Her body is covered in wounds, and she experiences relentless pain, yet she has lived a full life, defying doctors' early predictions.

Her journey has been significantly supported by actor Colin Farrell, who became a close friend after meeting at a charity event. Farrell has championed EB awareness, even pushing Emma in a wheelchair during the Dublin Marathon to raise funds and support for Debra Ireland, an EB charity.

Fogarty has now released a memoir, 'Being Emma,' chronicling her struggles with the condition, including cancer diagnoses, sepsis, and the amputation of her leg. The book aims to educate about EB and offer hope to others facing adversity, highlighting her determination to live a meaningful life.