Emma Fogarty, one of the world’s oldest living individuals with the most severe form of Epidermolysis Bullosa (EB), has released a new memoir detailing her remarkable life, her constant battle with the rare genetic disorder, and an extraordinary friendship with actor Colin Farrell. The 41-year-old Irishwoman, whose body is perpetually covered in severe wounds, recently gained global attention when Farrell pushed her for the final four kilometers of the 2024 Dublin Marathon, raising nearly €1 million for Debra Ireland, a charity dedicated to EB.
Epidermolysis Bullosa, often referred to as the “butterfly disease” due to the fragility of sufferers’ skin, affects approximately one in 50,000 people worldwide. For Emma, born in 1984, doctors initially predicted she would not survive a week. Her condition causes skin to tear away with minimal friction, leading to relentless pain akin to third-degree burns, and has resulted in fused fingers, a constricted throat requiring multiple surgeries, and the amputation of her left leg.
The deep bond between Fogarty and Farrell began serendipitously at a charity event in 2010. Farrell, known for his warm demeanor, immediately connected with Emma, demonstrating his empathy when he intervened to ensure she received a suitable meal, understanding the severe limitations her condition placed on her ability to eat. This initial encounter laid the foundation for a profound friendship that has endured for over a decade.
Despite the geographical distance, their friendship has flourished through regular communication, with Emma describing their exchanges as deeply personal and trusting. Farrell has consistently offered unwavering support through Emma’s numerous health crises, including multiple cancer diagnoses, sepsis, and pneumonia. He frequently visits her and her family for tea during his trips back to Ireland, cementing a familial connection.
The 2024 Dublin Marathon became a powerful testament to their bond and a global platform for EB awareness. Farrell, a patron of Debra Ireland, proposed running the marathon, which culminated in him pushing Emma across the finish line. The poignant images of the actor navigating the challenging final stretch with Emma in her wheelchair resonated worldwide, drawing significant attention to the often-overlooked rare disease and inspiring her decision to write “Being Emma.”
Her memoir candidly explores the daily realities of living with EB, from the excruciating pain caused by simple movements to the emotional toll of the condition. It also details her journey of defying medical predictions, pursuing higher education, and working at a bank until her health declined. Farrell played a crucial role in pulling her out of a deep depression following her leg amputation in 2019, demonstrating his commitment to her mental well-being by asking difficult, supportive questions.
EB patients face a heightened risk of serious complications, including infections, sepsis, osteoporosis, and particularly aggressive forms of cancer, due to the constant wounding and poor healing of their skin. Emma’s book sheds light on these severe medical challenges, aiming to educate the public and healthcare systems about the comprehensive support required for sufferers.
Farrell’s personal experience as a father to a son with Angelman’s syndrome, another rare genetic disorder, has reportedly deepened his understanding and connection with Emma and her family. Emma describes him as a “normal, down-to-earth guy” who has seamlessly integrated into her family life, sharing simple moments like having sandwiches with her mother.
Through her advocacy, Emma passionately campaigns for increased funding, research, and improved healthcare support for EB patients. She mourns the loss of close friends and fellow sufferers to the condition, emphasizing the urgent need for advancements. While she acknowledges some progress in awareness and treatments during her lifetime, a cure remains elusive, and systemic support is still critically lacking.
Emma’s mission to educate the world about EB, coupled with the steadfast support of her family and Farrell, has empowered her to reach an age many others with her condition do not. She hopes her memoir will serve as a beacon of hope for fellow sufferers and anyone facing life’s obstacles, asserting that with determination and inner strength, individuals can achieve anything they set their minds to.
In the foreword to “Being Emma,” Colin Farrell praises her “insistence on living a full and meaningful life,” highlighting her adventures, joy, and triumph over immense challenges. He describes her as one of life’s greatest teachers, expressing his wish that readers will experience even a fraction of the wonder, sorrow, strength, and hope he has gained through their friendship.
