Book review: Touching memoir of EB sufferer’s life

When she was born, Emma’s parents were told she wouldn’t survive infancy yet, despite countless obstacles, aged 41, she is now the oldest Irish person living with butterfly skin

Emma Fogarty with one of one of her most supportive friends, Colin Farrell, at the premiere of 'The Banshees of Inisherin' at the Lighthouse Cinema, Smithfield, Dublin, in 2022. File picture: Andres Poveda

• Being Emma 
• Emma Fogarty 
• Merrion Press, €15.99 

Emma Fogarty’s memoir has the subtitle — Living my Best Life with Butterfly Skin — and it lives up to that promise. 

She was born with a very rare condition called epidermolysis bullosa (EB) which means her skin is as fragile as a butterfly’s wings. 

EB is an incurable genetic condition that affects the body’s largest organ, the skin. 

It means that people living with EB are missing the essential proteins that bind the skin’s layers together, so any minor friction, movement, or trauma causes it to break, tear, and blister.

Emma describes it: “Doctors sometimes remark that EB wounds are similar to third-degree burns … the difference is your burns heal, your skin scars and gets better, and your pain eventually goes away.

“For me it never does. Just being is painful. Just sitting down, moving to wake a dead leg, turning in my sleep is enough to break the skin.”

When she was born, Emma’s parents were told she wouldn’t survive infancy yet, despite countless obstacles, aged 41, she is now the oldest Irish person living with the condition. About 300 people in Ireland suffer from it.

Many of us were first made aware of Emma and her condition when Colin Farrell ran the Dublin Marathon in 2024 — pushing Emma in her wheelchair for the final 4km — and raised a million for Debra, the butterfly skin charity. 

He is one of her most supportive friends.

Hollywood star Colin Farrell meets friend Emma Fogarty 4km from the finish line of the Irish Life Dublin Marathon in October 2024, completing a mammoth fundraising drive for Debra. File picture: Alejandra Livschitz/ Debra

Emma is an inspiration, despite her relentless suffering, with days of agonising pain, she comes across as determined to lead as full a life as possible. 

She loves going to concerts and spending time with friends. 

She is very honest in her memoir, giving details of how her condition has progressed over the years and telling us how much she hated losing her independence when she had to start using a wheelchair.

Shortly after she was born her Nana Fogarty found a little boy in Limerick suffering from EB, and her parents went to meet him. 

“Just seeing Bobby there so happy gave my parents real hope. It also gave them something else: a connection to another family who knew exactly what they were going through.”

Bobby became Emma’s best friend, for years he encouraged her to keep going, his motto was Carpe Diem (seize the day). 

Sadly, he died in his twenties, and the chapters devoted to her loss are among the most moving in her memoir.

Moving, in a very different way, are the chapters about her time at secondary school, where she was cruelly bullied and isolated. 

She had been very happy at primary, where the staff and students were always welcoming and supportive.

 It is beyond comprehension how cruel those girls were, and most of the staff at the secondary school weren’t much better. Reading about that period in her life will enrage you.

The reader cannot help empathising with Emma and her lifelong struggles. She is honest about the pain her condition causes, but never moans. 

One of the worst challenges is the effect it has on swallowing and how it has worsened, so her diet has become extremely restricted. Yet she presents this as her reality.

“I have EB, but it is not me; EB is not who I am. EB is a condition I have. But I am not my skin. I am Emma.”

Emma and her ghost writer Liosa McNamara must be commended for writing such a touching memoir.

Despite all the challenges and pain, Emma battles on, enjoying her life, surrounded and supported by her wonderful family and friends.