FINE Gael Cork North Central Senator, Colm Burke, has called for epidermolysis bullosa to be included in the long term illness scheme. Children who suffer from this rare skin condition are often referred to as the ‘Butterfly Children’ due to the fragility of their skin. Senator Burke made his call during an adjournment debate in the Seanad.
“Epidermolysis bullosa (EB) is a devastating and debilitating genetic condition. EB patients suffer blisters and wounds to their skin even after very minor friction. In mild cases, the disease results in chronic pain and immobility. Severe forms of the condition lead to a life of constant pain. It affects just 1 in every 18,000 babies born.