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.