Emma Fogarty’s body is at least 80 percent covered in wounds at all times - but the 41-year-old gives no indication of the relentless pain, likened to the searing agony of third-degree burns, as she laughs in the car with her mother and friend on their way home from a Christmastime lunch.
She was looking forward to Christmas Day, when she stays home every year with her parents and sister to watch Home Alone and enjoy a Bailey’s latte; it’s the one day of the year she takes off from agonizing bandage changes and the near head-to-toe wrapping regularly protecting her. That’s Emma’s reality of living with the most severe form of Epidermolysis Bullosa, a rare condition in which skin tears away like paper - or a butterfly’s wing.
