The Extraordinary Journey to Normalcy with Epidermolysis Bullosa


Emma Fogarty from Laois was born with epidermolysis bullosa (EB). Described as the “worst disease you’ve never heard of,” EB is a severe rare genetic skin blistering condition. Children born with EB have extremely fragile skin that blisters at the slightest touch.

Internal organs and bodily systems can also be seriously affected by EB. Currently there is no cure and the only treatment available is constant painful bandaging of skin to prevent infection.

From the moment Emma was born she had to fight for everything she has today. The doctors told her parents that she would never last the week, that if she did she would have no quality of life and might never even walk.

Now aged 31, Emma has accomplished so much more than anyone ever thought possible. She completed her Leaving Cert, moved out of home at the age of 18 to undertake a course in Limerick for three years.

Then when she had that finished she moved to Dublin and worked there for three years. And now she’s the Patient Ambassador of DEBRA Ireland, the only charity dedicated to providing support and services to children and adults living with EB.

Emma won the People of the Year Award in 2010 and was one of the Nissan Generation Next winners last year which saw her learning to drive and being the first woman with her type of EB to pass her driving test.

Read more of this story here. 

Filed Under: Insights, Patient Stories

Tags:, , ,

be-a-guest-blogger

Follow us on Twitter